36 - Intensive care units | Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)

Editors: Goldman, Ann; Hain, Richard; Liben, Stephen

Title: Oxford Textbook of Palliative Care for Children, 1st Edition

> Table of Contents > Section 4 - Delivery of care > 34 - Healthcare providers' responses to the death of a child

Healthcare providers' responses to the death of a child

Danai Papadatou

The myth

In Greek mythology, Chiron was considered the greatest and wiser healer of human suffering. Chiron was a centaur who had the head and torso of a human and the body and legs of a horse. He was a demi-god, born to the union of Cronus (an olympian God) and Philyra (an earthly nymph) who were transformed into horses at the time of his conception. When Philyra gave birth, she realized that she had brought to life a son, who was not a perfect human being. In desperation, she begged the Gods to have pity on her, who then transformed her into a linden tree. Thus, Chiron was left an orphan, until he was found by Apollo, the God of music, light, and poetry, who became his foster parent. Apollo taught him many skills and helped him develop into a talented and charismatic centaur who was highly respected by humans.

Chiron was very different from other centaurs who were forceful, unruly, aggressive, and violent, especially after drinking too much wine. For ancient Greeks, these centaurs represented the wild forces of nature, while Chiron, on the contrary, was perceived as wise, kind, fair, and sophisticated. He became the teacher and mentor of several mythological heroes (Hercules, Achilles, Aesculapius amongst others) and taught them the art of medicine, of ethics, of music, as well as skills of hunting and fighting [1].

One day, Hercules visited his centaur friend Pholos on the mountain of Pelion where centaurs lived. Being a good host, Pholos offered Hercules some good wine, the scent of which attracted the centaurs who lived in the area. They all arrived, quickly got drunk, and began to fight against one another. In his effort to protect himself, Hercules mistakenly wounded his teacher Chiron with one of his poisonous arrows. Being a demigod, Chiron was half immortal and did not die but was deeply wounded in his knee. Hercules immediately tended to the wound by following Chiron's instructions, but the wound proved to be incurable. From then on, Chiron engaged into a quest to ease his suffering. Progressively, he discovered the healing powers of various herbs and plants and developed an increased empathy for the suffering of others. His wounded knee forced him to direct his attention to the horse-part of his body to which he had given but little importance until then. This lower part of his body was the cause of an earlier psychic wound brought about by his abandonment by his mother. It is, therefore, suggested that both physical and psychic wounds, allowed Chiron to turn inwardly and face his suffering and limitations [2].

In Greek mythology, he is known as the wounded healer . This great healer taught his student Aesculapious that every healer carries a wound to remind him that he is vulnerable. From such a wound, the healer can draw the knowledge that he is not all powerful, all knowledgeable, and invincible, but rather limited, imperfect, and mortal. Such awareness can help any healer develop a deep compassion for others.

The reality

The myth of this wise healer contains three messages, particularly useful for care providers who offer their services to dying and bereaved individuals.

The first message is that we are all vulnerable in the face of illness, dying, and death. These experiences affect us in different ways and to different degrees, and as a result, we often experience suffering. Nevertheless, we hardly ever use the term suffering to describe the emotional, social, and spiritual impact that the care of the dying and the bereaved has upon ourselves. We attribute suffering only to patients and their family members and prefer to define our personal malaise in terms of distress , burnout , or compassion fatigue .

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The second message in this myth is that our vulnerability may bring to the surface, issues related to deeper personal wounds and prior losses, which had never been grieved and integrated into our life. This reactivation of past issues offers a unique opportunity to work through our wounds and examine our fears and anxieties about loss, separation, and death. In addition, it helps us reflect upon our altruistic and egotistic motives for choosing to work in this particular field, and to consider how we seek to satisfy conscious or unconscious personal needs for omnipotence, perfection, control, recognition, or other.

The third message in Chiron's myth is that wisdom and personal growth can stem from recognizing and accepting our vulnerability. According to the Longman Dictionary of Contemporary English [3], vulnerable is someone who is easily harmed or hurt emotionally, physically, or morally . Based on such definition, vulnerability is perceived as a sign of weakness, a negative attribute, a condition we should avoid at all costs because it raises our discomfort and displays our shortcomings and limitations. We mistakenly assume that we should strive towards being invulnerable, in other words, strong, in control, on top of a situation, able to effectively cope, and avoid being damaged, or affected by painful experiences.

The point, which concurrently relates to the myth of Chiron, is that being vulnerable is a necessary and welcome condition when caring for the dying and the bereaved. It entails an ability to remain open to the other and allow the other's experience to enter our personal world. It implies that we are permeable, penetrable, willing to come close and develop an intimate relationship with a patient or a family member who experiences death and separation. This intimacy holds a risk: either to identify totally with the other person and feel that we are dying as well, in which case, we cannot be effective in our helping role, or to identify with aspects of a situation encountered by a person whom we try to understand and support. There is a qualitative difference between these two identificatory processes. The first is total and massive, allowing no differentiation between oneself and the patient or family member. The latter is transitory and comprises an ability to identify with certain aspects of the other's experience (e.g. the fear for the unknown, or the sadness caused by the impending separation, or the need to attribute meaning to one's life and existence), while concurrently maintaining our own perspective of the situation. This form of identification is possible through empathy.

In empathy, we do not equate the person's world with our own, but we try to understand his or her world as if it were our own. As if is a critical element in this process because it contains both perspectives: the other's and our own. When we fail to be empathic, we become preoccupied with how to display a detached concern , and seek to achieve the right distance in our relationships with patients or their relatives. We mistakenly assume that there is an objective, perfect distance that is both close enough and appropriately distant from our patients. We imagine that if we ever manage to obtain it, we will be safe, intact, and unaffected by the pain, loss, and emotional chaos that may unfold around us or within ourselves. In reality, the distance we develop with others changes constantly and varies with the nature of each relationship, and according to the circumstances we encounter. Therefore, a distance that feels right at one time with one person may be uncomfortable at another time with the same or different individual.

It is my belief that the only distance we have power to determine and control is the distance we choose to maintain from our own selves. Such distance enables us, first, to recognize how we are affected by our patients, and second, to process the impact that loss and death-related experiences have upon ourselves. Our willingness to turn our gaze inwardly may help us better understand how we invest our relationships with patients and families, and how we are affected when we remain open and vulnerable.

The nature of a care-provider's vulnerability

Vulnerability is not an inherent asset we possess or not possess. We are, more or less, vulnerable at different times in our professional and personal growth and development. The degree of our vulnerability varies on a continuum. At one end of this continuum, we experience ourselves as totally vulnerable, overwhelmed by our experiences, at risk to experience even psychological breakdown. At the other end, we perceive ourselves as invulnerable or invincible by illness, pain, suffering, death, and operate according to the principle of omnipotence. Somewhere in the middle, we experience a vulnerability that is potentially constructive and helpful both to our patients and to ourselves.

The nature and varying degrees of vulnerability become more apparent through the description of different care-providers at three imaginary points on this continuum. First, are presented some characteristics of those professionals who function at either extreme of the continuum, and who are described as totally vulnerable and invulnerable . Then, the characteristics of those, who function effectively and are referred to as good enough , are presented (Figure 34.1).

The overwhelmed care-provider

The Overwhelmed Care-Provider is highly permeable in his or her relationships with patients and consequently highly

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Fig.34.1 The nature of a care-provider's vulnerability.

vulnerable. By maintaining no boundaries, he or she tends to fully identify with them and, thus, remains unable to hold a personal perspective upon his or her experiences. Totally overwhelmed, he or she is threatened by personal disintegration and is traumatized repetitively, whenever confronted with the suffering of his or her clients which becomes his or her own.

Feeling shame and guilt due to the inability to effectively cope with such experiences, he or she alienates self from patients and colleagues or moves to the other extreme of the continuum and becomes unavailable, emotionally impermeable, or adopts a faade of omnipotence, and overpowering control. This is illustrated in the account of a care-provider who consistently identified with children who had cancer, never gave herself the time to process her experiences and did not seek support:

I think that I age quickly, both biologically and psychologically as a result of this work (with terminally ill children) Now, I experience a pressure upon my heart, a constant weight that does not allow me to breathe.

She later added:

Now, I don't want to be close to any dying child or family. I cannot handle neither their suffering, nor my pain anymore. I cannot even sit by their side, the silence seems veryheavy I have nothing to offer words don't come out .I cannot even give this special and tender look I once gave to my patients. If ever I give it, it's filled with despair.

While some highly vulnerable care-providers avoid the suffering of their patients, others on the contrary, choose to cope with their traumatization by repeatedly exposing themselves to death situations in the hope of mastering their trauma. Not infrequently, they engage in repetitive accounts of their suffering which are hardly ever processed at a deeper level and elevate themselves into a martyr role in order to overcome their perceived inefficiency and threat of psychic disorganization.

The perfect care-provider

The perfect care-provider does not simply strive for perfection which is normal and desirable but is characterized by a compulsive need to prove to oneself and others that he or she is perfect and omnipotent. This obsessive striving serves to hide a latent vulnerability and fear of psychic disorganization in the face of illness, suffering, and death. Since death cannot be conquered and the life of a patient cannot be saved, this palliative care-provider usually fights towards the achievement of a perfect death which is beautiful , pain free, with family members gathered in peace around the patient, having settled all their unfinished business. He or she, often displays a behavior described by Speck [4] as chronic niceness which refers to an appearance of being always empathic, understanding, unconditionally accepting and loving towards all patients who are expected, in return, to reward him or her with a nice death to occur in a perfectly organized and healing environment.

Absorbed by such a narcissistic need for perfection, the perfect care-provider remains impermeable and unaware of the individualized needs of patients and families, since he or she foresees their needs, long before they have the chance to voice or express them. Unable to develop authentic and intimate relationships, he or she, often, displays a false self. A latent impermeability exists in the provider's interaction with patients and families along with a defensive lack of introspection. The perfect care-provider fears and often denies his or her own vulnerability, limitations or imperfections, and experiences as personal failure any death that is perceived ugly, painful, frightening, or less than perfect.

In summary, being totally vulnerable or acting as if one is totally invulnerable has damaging effects both upon the quality of care itself, as well as upon the mental health of the care-provider. The destructive aspects of one's vulnerability have been the subject of research studies and of interesting debates

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in the related literature, where different conceptualizations have been offered to delineate various aspects of care-givers responses at either extreme of the continuum, described above.

Among these conceptualizations, the most commonly used is burn out, which is defined as a syndrome of physical, emotional, and mental exhaustion caused by the long-term involvement in emotionally demanding work situations. Care-providers develop negative attitudes towards patients, evaluate themselves negatively, and experience increased dissatisfaction with their work accomplishments [5]. It is often assumed that care providers who are frequently exposed to patient deaths, experience higher levels of burn out by comparison to those who care for patients with less serious health problems. Research findings, however, suggest that although highly stressful, such exposure does not correlate with higher levels of burn out [6, 7, 8, 9, 10, 11, 12]. In fact, some studies highlight the rewards derived from caring for dying patients, and the availability of staff support programmes in hospice settings, which seem to counteract the increased levels of distress [13, 14, 15, 16, 17, 18].

More recently, Figley [19] proposed the concept of compassion fatigue to describe the exhaustion of some professionals who as a result of being exposed to traumatized clients are traumatized themselves and exhibit similar characteristics to the people they serve. Figley suggests that those providers who display increased empathy and identify with their clients are at great risk to develop a secondary traumatic stress disorder.

In similar terms, but perceived from a constructivistic theoretical perspective, McCann and Pearlman [20] present the concept of vicarious traumatization to highlight the disruption of the provider's beliefs about self and others, causing profound changes in one's sense of meaning, identity, and worldview. They suggest that such disruption may lead to the re-construction of new cognitive schemata, which create new meanings allowing the integration of the cumulative impact of trauma work.

The above conceptualizations have been used to describe extreme forms of vulnerability, which render a provider ineffective and/or impersonal in his or her work. Focus is placed upon the negative outcomes of care giving, rather than upon the process(es) by which trauma and dysfunction develop and are established.

The good enough care-provider

An effective care-provider who is good-enough (Fig. 34.1) has similar characteristics to those proposed by Winnicott [21] who used the concept of good-enough parent to describe the significant role played, particularly, by mothers in creating an appropriate and safe environment which facilitates the healthy development of their infant. The good-enough provider is characterized by a vulnerability similar in certain ways to that of the mother. By being highly sensitive, he or she is alert to the needs of his or her patients and actively adapts to them to the best of his or her ability. However, part of being good enough implies also, an ability to gradually fail to adapt to those needs when the patient becomes independent and self-sufficient, or when the provider gently introduces a reality that the patient avoids to confront. In terminal care, failure to adapt may also entail the ability to allow the patient to regress into a symbiotic relationship with the care-provider. This undifferentiated symbiotic relationship reinforces the illusion that both, patient and provider, will face terminal illness together and carry each other beyond the borders of death. So, even though a good-enough care-provider knows that he or she will never be able to complete this journey, he or she, nevertheless, sustains this illusion for the sake of his or her patient. This becomes possible only if the provider is willing to face the threat of loss, tolerate the anxiety and suffering it evokes, recognize that he or she is personally affected, and realize that caring for the dying does not confer any protection against his or her own death [4]. Thus, he or she avoids projecting an image of omnipotence which consciously or not reinforces the expectation that he or she is the perfect professional who can ensure a perfect cure or a perfect death. Instead, the good-enough care-provider projects an image of mature acceptance of both his or her strengths and limitations as he or she adapts to the patient's changing needs in a shared journey towards death. With a good enough care-provider on his or her side, the patient is then able to accept his or her carer's vulnerability, imperfection, and deficiencies. In fact, this understanding and acceptance release the provider from the need to be perfect.

Aspects of this form of constructive vulnerability have been described by Benoliel [22], a pioneer nurse in thanatology, who observed that both nurses and physicians display normal grief reactions when caring for patients who die, and by Shanfield [23], a psychiatrist, who underlined the importance of training health-care professionals to recognize their grief responses. It seems, therefore, that grieving is a natural and healthy response, which results when the professional emotionally invests his or her work and relationships with patients. During the last two decades, an increasing number of clinicians and researchers have shed light upon health-care professionals' grieving process, thus recognizing the vulnerable and human aspect of care giving [24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34]. Focus is, therefore, progressively shifted towards the normalization and acceptance of professionals' responses, rather than upon pathology and dysfunction that is caused by the exposure to highly stressful situations.

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A model of care-providers' grieving process

To better understand the responses of care-providers who care for dying children, we conducted a series of qualitative studies, in order to explore the experience of those who provide care to dying children in paediatric oncology and critical care units [33, 34]. We used a grounded theory methodology according to which, processes and products of research are shaped from data rather than from preconceived and deduced theoretical frameworks [35]. In-depth personal interviews were conducted through consecutive studies in order to identify similarities and differences in health-care providers responses to childhood death. Professionals responses were compared with regard to cultural factors (Greek vs. Hong Kong samples) [33], professional backgrounds (physicians vs. nurses) [34], work settings (paediatric oncology vs. critical care units), and needs for support [36]. Findings revealed more similarities than differences and a model was derived from the qualitative analysis of empirical data, which sheds light into the grieving process of providers who care for seriously ill and dying children [37, 38]. Five of the most relevant propositions comprising our model (Table 34.1) are:

Proposition 1: The dying process and death of a child is experienced as a loss, which triggers a grieving process

The dying process or death of a child is usually experienced as a loss, which subsequently, triggers in care-providers, a grieving process. This loss, however, is perceived quite uniquely by individual team members. So even though a whole team may be grieving the death of a given patient, in reality each care-provider may be grieving over a different loss. We've identified seven distinct forms of perceived losses (Table 34.2). Death may represent:

the loss of a close personal bond developed with a given child
the loss of a loved person, through the care-provider's identification with the pain and suffering of a particular relative
the non realization of one's professional goals and expectations regarding the ability to cure, to control a life-threatening illness, or to ensure a good death for the child
the loss of one's personal and familiar assumptions about self, others, and life, often disconfirmed since childhood death is commonly perceived as reversing the laws and order of nature
the emergence of a past unresolved or traumatic loss encountered in the care provider's life
the anticipated and fantasized loss of a loved person, who is, not necessarily, in any danger of dying
the sharp awareness of one's mortality.

Each care-provider may experience none, one or more losses throughout the dying process and the actual death of a particular child. The subjective experience of one's loss(es) elicits a natural grieving process that presents some unique characteristics. These characteristics cannot be understood according to traditional grief models, which describe a series of stages, phases that bereaved individuals go through, or according to specific tasks they have to accomplish, in order to adjust to the loss of a loved person. Our findings suggest that care-providers grief is a dynamic intrapersonal and interpersonal process which presents some unique characteristics as a result of confronting daily situations in which pain, suffering, and death are expected events and part of one's work and chosen career.

Table 34.1 Propositions of a model on care-providers grief

1.	The dying process and death of a child is experienced as a loss which triggers a grieving process
2.	The grieving process of care-providers involves a fluctuation process between experiencing and avoiding or repressing grief
3.	Grieving involves a process of attributing meaning to childhood death and to one's professional role and contribution in patient care
4.	Grieving complications occur when there is persistent lack of fluctuation between experiencing and avoiding or suppressing grief responses
5.	The fluctuation of the grieving process is affected by the complex interaction of multiple variables

Table 34.2 Nature of perceived losses in relation to patient death

1.	Loss of the bond developed with a particular child
2.	Loss of a loved person, through identification with a relative's grief
3.	Loss though the non-realization of one's professional goals and expectations
4.	Loss of familiar assumptions about self, others, life, and death
5.	Recurrence of past unresolved or traumatic loss(es)
6.	Anticipated and/or imagined loss of a loved person who is not, necessarily, in danger of dying
7.	Death of self-realization of one's mortality.

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Proposition 2: The grieving process of care-providers involves a fluctuation process between experiencing and avoiding or repressing grief

The grieving process was found to involve an ongoing fluctuation between experiencing grief reactions by focusing on the loss and avoiding, suppressing, or repressing grief reactions by moving away from it.

This fluctuation from one pole to the other which is necessary, adaptive, and healthy is eloquently illustrated in the account of the following male nurse who described his personal experience of caring for a dying child:

Even though I have tears when a child is dying, I hold them back because I am aware that the child understands everything. However, the moment the patient expires, I cry a great deal I don't know why it's a form of intense release over having been there all night, over the fact that this child has just died I don't know. This emotional release liberates me from a heavy burden, and then I can think, What next? . I am then able to collect myself and get into another psychology (mood): that of my role as a nurse. I then become a leader a leader who must bring everything back to order, who must see to the parents, to the dead child, to the unit, and to all the duties needing to be carried out before dawn Grief does not stop the day after the child's death and is not limited to the confines of the unit. We will always remember some of the things a particular patient did, or some other child will bring back memories of our favourite one. It is as if there is an ongoing relocation of the loss, a stirring that never stops.

This account illustrates how the fluctuation process develops within few hours, yet, it also suggests that grieving is ongoing as the nurse re-thinks, re-constructs the loss experience, and gives new meaning to it before re-locating it in his private world.

A closer examination of both aspects of the fluctuations can help us understand some of the common ways by which care-providers experience and avoid loss and grief.

Experience of grief and loss

When care-providers experience grief by focusing on their loss(es), they display a wide range of affective, cognitive, behavioural, and physical responses. Some describe the recurrence of positive or negative thoughts regarding the child and the dying conditions. Others report feelings of sadness, of depression, of anger, or guilt. Those who cry over various aspects of their perceived loss(es), may experience a cathartic effect, while others report a distressing outcome. The grief, which precedes death may extend over a number of days, as suggested by the following nurse:

I cry and cry for a week before a death, and after the death. I sometimes dream of the child and light a candle, especially if I have not attended the funeral. At home, I withdraw and I do not want to talk to anybody, not even to my children.

Anger and despair are also common responses as illustrated in the following account:

It's terrible I sit on my bed and stare at an armchair in front ofme .I feel like throwing it out of the window. Some day I will. I sit there with a cup of coffee and I think, think, think of the child, of what happened all by myself, for hours.

While some providers temporarily withdraw from daily activities and grieve in private, others seek support among colleagues and loved ones, while few alternate between privacy and social sharing of their grief. Some report being able to better accept death and experience their grief, if present at the moment a child expires or if at the funeral they participate in rituals, which commemorate the patient. This was evident in the following account of a physician who wished to be present at the death scene and, concurrently, sought a private space for his own grief:

My role ends when I close the child's eyes and bring the parents into his room. After that, I leave. I go downstairs (to my office) for an hour or so. I sometimes listen to music. I do my grieving, I think about the child's death.

Some care-providers grieve over the death of a patient at times they least expect it, as reported in the following account:

Sometimes it happens that while I am crying for something personal, I include in my sorrow a second grief about the children who died in our unit, and I cry for those with whom I had shared a special bond.

This indicates that even though grief is often inhibited, it nevertheless, surfaces and becomes conscious later in time. Cook and Oltjenbrun [39] refer to incremental grief in order to describe the additive process of multiple related losses which are grieved and re-grieved over time.

Avoidance, suppression, or repression of grief

Part of the fluctuation process involves an attempt to avoid, suppress or repress one's grief, and move away from the loss experience. This is not, necessarily, maladaptive. Sometimes, it serves as a defence against a stressful and highly threatening situation, but it may also serve as a functional approach to manage work tasks, which need to be carried out when a child is dying or dies.

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Other common avoidance responses include a sense of numbness and a shut down of all emotional responses in order to cope with the challenges of terminal care. Under those conditions, care providers often report: I feel nothing , I am in limbo or they control their feelings by convincing themselves with statements such as: I must be strong , I must control my tears, because I wear a uniform , I must hide my vulnerability , Patients and families have priority and I must support them . These cognitive, self-reinforcing strategies, seem effective when used temporarily without preventing the provider to recognize and cope with his or her grief and suffering at a later point in time.

Another avoidance response involves the maintenance of distance from dying children and their families, or the active engagement in clinical duties and practical tasks that keep the provider busy, unavailable to patients, and distracted from his or her own pain. To counteract their anxiety and distress, some care-providers adopt an aggressive approach towards symptom management or pursue futile clinical tasks, as reported in the following account:

I do everything in my power to keep the child alive. I even do useless things and go to extremes so that he does not die before my shift is over.

A temporary distorted perception of reality may protect them from experiencing their losses and grief. Through depersonalisation, they manage to be psychically absent from situations, which are painful and threatening:

What hurts me most is that I cannot help grieving parents, not even hold their hands or give them a hug. Nothing comes naturally. Sometimes, I catch myself avoiding to talk to them. I pass in front of them as if I do not exist, as if I am not there, present.

Occasionally, care providers distort reality by dehumanising the comatose child, and describe him or her as a doll. Alternatively, they humanize a dead child and treat him or her as asleep in order to manage the care of his or her dead body. This process, when temporary, allows them to regulate their grief and respond to the needs of a situation, which is perceived as highly distressing.

Avoiding, suppressing or repressing grief is, sometimes, achieved by plunging into activities that generate a sense of being alive and living (e.g. going out to party, making love, cooking, gardening). These activities provide a symbolic space and a context within which the provider reconnects with self and loved ones. Thus, a new sense of self is construed which expands beyond one's professional role and loss experiences.

In summary, the fluctuation of a natural grieving process is commonly experienced among health care-providers who provide care to dying children. Nevertheless, unique to each professional, team or institution, is the way grief is expressed and the way the fluctuation process is regulated, as evidenced in studies conducted in Greece, Hong Kong, and Canada [31, 32, 33].

Proposition 3: Grieving involves a process of attributing meaning to childhood death and to one's professional role and contribution to patient care

The fluctuation involved in the grieving process helps professionals both to acknowledge their loss(es) and to set them aside in order to function appropriately without being overwhelmed by their grief. Moving in and out of grief, looking closely but also from a distance at the uniqueness of each death, care-providers are helped to attribute meaning to their loss experiences. As a result, death is not forgotten or overcome but, rather, accommodated into one's cognitive framework of life. Meaning attribution is accomplished at two levels:

Meaning is attributed to the death of children

Care-providers try to answer questions such as: Why children die? , Why did this particular patient die? . In response, some find meaning in scientific or biological justifications (e.g. death is perceived as the inevitable outcome of a fatal and incurable disease). Others find meaning through philosophical attributions (e.g. death is perceived as an integral part of life's cycle), while several rely upon their religious beliefs to make sense of childhood death (e.g. it is God's will or the fate of the child's karma). Some care-providers develop a combination of various systems of meanings, often displaying a maturity towards a reality that is complex as it may hold different, even divergent meanings and interpretations. Finally, few seem to find no meaning in childhood death.

Meaning is attributed to one's personal role and contribution with regard to the care of the dying child

Care-providers seek to answer questions such as: What is my role in terminal care? , What is the quality of care I provided to this particular child or family? , How am I affected by his or her death? , What did I learn? , What did I gain? , Why do I suffer? . For some, care is perceived as meaningful when they succeed-through their knowledge and interventions to effectively manage the challenges imposed by a difficult disease or the biological process of dying (disease oriented meaning). For others, contribution acquires meaning when the quality of

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their relationship with a given child and family contributes to an inevitable but, nevertheless, dignified death (relationship-oriented meaning).

Such personal systems of meaning are affected by collective systems of meanings occurring at the level of each team. The social aspect of meaning-making becomes apparent through the exchanges and discussions, which take place among professionals before or after the death of a child. By recounting the patient's passage through the unit, a collective story with meaning is created. In some units, the focus of discussions is primarily on clinical interventions, while in others, it is mostly on the patient's, the family's, and the providers responses to dying and death. The content of these narratives contributes to the creation of a story that explains the illness, the suffering, the death of a given child, and highlights the role and contribution of individual professionals and of the team as a whole. Each story acquires meaning in relation to the unit's goals and primary task. When professionals remain silent in the face of dying and death or when they are unable to create some coherent story to place a particular death within a meaningful context, then discomfort increases, and grief presents complications or remains disenfranchised.

Proposition 4: Grieving complications occur when there is a persistent lack of fluctuation between experiencing and avoiding or suppressing grief responses

Care-providers who present grief complications, operate at the extreme poles of the vulnerability continuum. Some of them become totally overwhelmed by grief, unable to effectively manage the care of dying children and grieving families, as indicated in the following brief report:

I don't laugh anymore I feel totally overwhelmed by my own pain that seems endless.

Others, on the contrary, become totally detached and systematically suppress their suffering, avoid to think, feel or process their experiences, as evidenced in these two accounts:

I close my pain in a little drawer and do not allow myself to think or feel.

I've learned to simply switch off and avoid all visual images of what I've witnessed.

Unable to process their losses, care-providers at both extremes of the vulnerability continuum, experience a sense of immobilization, of being trapped, and being in an impasse. Their sense of time is suspended. Their experiences are not integrated into a past, present, and future. There is no movement or growth. They become either totally mute or resort to repetitive detailed accounts of traumatic experiences filled with anxiety, helplessness, and hopelessness. Unable to process their suffering, they become traumatized by their own vulnerability or appear invulnerable to avoid further trauma.

Proposition 5: The fluctuation of the grieving process is affected by the complex interaction of multiple variables

It is suggested that grieving is not merely an intrapsychic process understood solely in relation to one's personality, sense of vulnerability, motives to care for the seriously ill, and loss history. Grieving needs to be understood in relation to a number of complex, interactive variables [37, 38]. These can be classified in five major categories: (1) personal variables (personality characteristics, loss history, professional goals and motives, nature of perceived losses); (2) patient-family related variables (personality characteristics, family dynamics, coping with threat or actual death, relationships developed with providers); (3) situational variables (illness trajectory, dying and death circumstances); (4) work-related variables (unit's primary task, goals of care, rules about professional conduct in the face of death, team-dynamics and functioning in adverse situations); and (5) socio-cultural variables (institutional, social, cultural socialization to death and dying, prevailing meaning systems with regard to children, illness and death).

All these variables affect how the death of a child is likely to be perceived, and how grief is likely to be experienced and processed at an individual, as well as, at the level of the team. The death of a child affects in different ways care-providers who work in different settings. Each unit has its own culture that comprises a system of beliefs, values, priorities and primary task(s) with regard to the care of children in illness, dying, and death. The team's culture is governed by a number of explicit or implicit rules which determine among other things the roles, responsibilities, and expected behaviours of professionals in the face of death. These institutional rules regulate the fluctuation process between experiencing and avoiding grief at a systemic level, and are more or less effective in helping individual care-providers to cope with daily losses at work. Based upon these rules, each team develops group processes, which recognize personal vulnerability and encourage the experiencing of grief (e.g. informal or formal sharing; consultation or stress debriefing sessions; prayer and group rituals following the death of a child). Yet, each team concurrently develops group processes, which reinforce stoicism, grief suppression, and the illusion of invulnerability and omnipotence (e.g. discussions of patients in scientific terms; evaluation of clinical interventions; idealization of the team; avoidance and/or ridicule of personal feelings; death jokes).

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The following example illustrates the power of certain unconscious rules, which regulate the grieving process in two different work settings. These rules were uncovered only after interviewing individually all care-providers who worked in these units.

In the oncology unit, the primary task of the team was to strive for a cure and psychologically support the child and the family. Whenever cure proved to be an impossible goal, the primary task shifted to palliation through the active management of the child's pain and other distressing symptoms. During the terminal phase, team members were encouraged to maintain close and supportive relationships with dying children and grieving parents. So, according to one implicit rule, it was accepted and perceived natural to experience and display grief responses when a child was dying or died. However, according to another rule, the intensity and expression of professionals grief responses should be tempered and controlled. It was expected that grief responses would never be so intense as to impair clinical judgment or lead to emotional breakdown. Another rule implied that the care-providers vulnerability and suffering should never be apparent to other sick or dying children and to their parents. Team members were expected to publicly display stoicism with regard to their emotions, and to act joyful towards hospitalized children whenever a death occurred on the unit. An additional rule, however, suggested that grieving should remain private and expressed only behind closed doors. Co-workers were expected to support one another and share their personal experiences during specific times of formal or informal gatherings.

In the intensive care unit, the team's primary task was to save the life of critically ill children at any cost. Due to the uncertainty of prognosis, close relationships were discouraged and interactions with family members were kept brief to avoid emotional involvement. Death was perceived as the team's failure to save the child's life, and rules discouraged the display of grieving. The implicit message was: Do not grieve, at least not openly. It may be contagious to your colleagues. Be strong and brave in the face of death Care-providers helped each other to control their grief responses by limiting discussions to evaluations of medical and nursing interventions, and by sharing cynical death jokes.

It becomes apparent that each unit has its own private code, value system, and norms, which facilitate or hinder the grieving process and allow a more or less constructive sense of vulnerability to develop. Interestingly, some rules can help certain care-providers who are usually overwhelmed by grief, to learn how to contain it, while other rules help those providers who systematically suppress their grief, to acknowledge and express their feelings within a safe and permissive environment.

Reflections about the proposed model

The main message that the model conveys is that part of being vulnerable when caring for children, who eventually die, is to experience and come to terms with a normal and healthy grieving process over one or more perceived losses, which are triggered by the dying process or death of a patient. It is important, however, to differentiate the fluctuation process involved in grief from a similar oscillation process observed by other researchers and clinicians who focused primarily upon the dys-functional traumatic responses that providers display in the face of trauma, loss, and death. More in particular, Horowitz in his seminal work on trauma [40] identified the antithetical reactions of intrusion-avoidance as a person's extreme responses to a traumatic event. He focused on the pathology of intrusion through which, the individual re-experiences feelings and ideas surrounding the event, and the avoidance process by which he or she denies feelings, memories, and thoughts regarding the event. Similar responses were recorded by Raphael [41], Figley [19] and other researchers who studied the effects of trauma rather than grief experienced by crisis workers who witness multiple and horrific deaths in disaster situations.

More closely related to the study of grief, is the Dual Process Model of Coping with Bereavement , proposed by Stroebe and Schut [42, 43]. They describe an oscillation process that individuals experience over the death of a loved person in their attempt to adapt to two types of stressors related to bereavement: (1) a loss orientation process (concentration on an aspect of the loss experience intensive grief work) and (2) a restoration orientation process (concentration on secondary stressors resulting from the death of a loved person). This dual process model represents an interesting attempt to integrate existing ideas from a cognitive stress theory and social construction models related to grief [43]. Focus is primarily placed upon the definition of stressors associated with bereavement and the identification of adaptive coping strategies, which facilitate adjustment of the bereaved to these stressors.

Even though our model presents several similarities with Stroebe and Schut's dual process model, differences, nevertheless, exist at a conceptual level, in the terminology used to describe the bereavement process, and in the bereaved populations under study. Our proposed model focuses more upon intrapsychic and systemic processes rather than upon stressors and coping strategies, which promote adjustment to death. Based upon a phenomenological, a systemic, and a social constructivistic approach, we suggest that grieving is affected by how individual care-providers as well as teams recognize and process loss events, experience and avoid subsequent grieving, and attribute meaning to death as well as to their contribution

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in patient care. One's personal grieving can be understood only in relation to the institutional context in which care is provided, and with regard to the team's primary task, culture, and rules which determine how professionals are expected to function and respond in the face of death.

The functional team

Every death creates a rupture to the bond that exists between individuals. The death of a child threatens the connectedness among family, members but also the solidarity among team members. Sometimes, the team mirrors the suffering of a family, which falls apart. As a result, its cohesion may be seriously compromised. The multiple ways by which a team re-constructs itself after the death of a patient are indicative of how functional it remains in the face of adversity.

It is suggested that a team is functional when it provides a holding environment for its members. The concept of the holding environment was first mentioned by Winnicott in a paper entitled The theory of the parent-infant relationship [44]. It refers to the physical act of being held by a mother who expresses love to her infant and offers protection from any danger. This behavior functions as a continuation of the protection her womb previously provided to her unborn child. In addition to protection and safety, such an environment offers a sense of order, predictability, and continuity as the mother introduces in small doses, the external world to her child who progressively accommodates to the external reality. In adulthood, our holding environment is comprised by our family and friends, the network of our colleagues, the social institutions and government policies and services, all of which provide conditions of safety, order, predictability, and continuity in times of trouble. In our daily work with the dying and the bereaved, it is within the team, institution or service we belong to, that we seek this sense of safety, predictability, order and continuity, as well as a coherent cognitive framework to help us attribute meaning to our experiences.

A team that offers a holding environment is able to contain grief and to hold within itself the suffering of its members without being threatened by it. Such a team allows care-providers to share verbally or symbolically their experiences and to ventilate all kinds of thoughts and feelings no matter how threatening or painful these may be. Nevertheless, emotional ventilation is not enough by itself, as it may, at times, even prove destructive to some providers. A further cognitive process is necessary in order to help team members to gain deeper insight, attribute meaning and integrate their experiences into a coherent narrative. In reality, it is only within a holding environment that care-providers are able to recognize and explore the threatening realization that all of us, and not only seriously ill patients, eventually die.

Table 34.3 Common dysfunctional patterns in teams dealing with loss

Scapegoating

Splitting and rigid sub-grouping

Avoidance of change

Team burn out

Whenever a team is unable to provide this holding environment, then grief is acted out, intense feelings are projected, and dysfunctional patterns of interaction are established. Some common dysfunctional patterns by which teams cope with loss (Table 34.3) are:

Scapegoating is particularly common in teams which cannot tolerate and work through intense emotions which are, therefore, projected upon a scapegoat. Scapegoats help team members to displace their grief, which is never openly acknowledged and processed.
Splitting occurs when team members are unable to personally and collectively cope with intense and conflicting feelings evoked by dying and death such as, for example, the need to fight the disease and the need to let go and accompany a child to death; the need to become intimately involved with a patient or family and the need to shun away from close relationships; the need to grieve and the need to remain stoic; the need to be supported and rely upon colleagues and the need to remain independent and self-sufficient. When these conflicting emotional experiences are not recognized, tolerated and integrated, care-providers tend to project them upon others, within or outside their team [45]. Members belonging to the same subgroup project negative qualities to members of another group, while they maintain all the good qualities within their own. Care-providers who find refuge in one of these subgroups, remain unable to integrate the conflicting emotional aspects of their death-related experiences. It is not sub-grouping per se that is destructive to the team, but rather the impermeability of a small group which develops its own private code of values and communication rules excluding other team members from belonging to it. Such splittings are indicative of a team's failure to collectively cope and integrate loss and death in its history and development.
A voidance of change reflects, among other things, the team's difficulty to cope with loss and grief since both experiences involve changes and new adaptations. In dysfunctional
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teams, members cling to what is familiar and rigidly abide by rules. Nursing, medical procedures, and psychological assessments are standardized and performed in a ritualistic way, while decisions, initiatives are minimized, and projects or new ideas are resented. Whenever problems occur, quick and prescribed solutions are sought. In such teams, collective signs of burn out are displayed through low moral, low quality of care, and chronic disputes among professionals who feel trapped in a job from which they derive little or no satisfaction. Providers become more absorbed by their relationships to the group than by their primary work tasks or goals of care.

An effective way to manage projections, splits, resistance to change, and other non-effective patterns of functioning, is to create the necessary holding environment that recognizes and explores both the destructive as well as the constructive aspects of a team's vulnerability in the face of death and dying. In that respect, support , consultation , exploration or discussion groups may facilitate the process, if led by an experienced mental health professional or a consultant who has deep knowledge in group dynamics and does not belong to the institution or service which provides care to chronically or critically ill and dying children. Maintaining a stance outside the daily life of an institution makes it easier for such a facilitator to observe, reflect upon his or her observations, communicate them to team members without being caught in the group's dynamics.

Conclusion

The death of a child invites care-providers to confront and come to terms with their strength, limitations, and personal suffering. If these are recognized, accepted and processed, then one's vulnerability may become a source of maturity and growth. If left silent, suppressed, unattended or ignored they may become a source of stress, of alienation and, occasionally, of dysfunction.

We can claim quality in paediatric palliative care, when good-enough care-providers and good-enough teams recognize the risk of being affected but also create the necessary space to experience, reflect, understand, and process their losses, grief, and suffering. This is facilitated when the dying process and death of children are not idealized, romanticized, or shunned away, but rather experienced within a holding environment which helps care-providers to experience and integrate loss into a narrative that is coherent and meaningful, both personally and collectively. A functional team enhances in its members, a sense of belonging to a group, which can tolerate suffering, draw upon its strengths, and learn from experience.

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