Prolonged grief as a disease?
The eleventh version of the International Classification of Diseases (ICD), which became effective in 2022, has raised a number of issues connected to medical ethics. It is in this context that the paper explores the normative view of grief as a disease (Klass et al. 1996; Archer 1999; Wilkinson 2000; Stroebe et al. 2008; Wakefield 2012; Wittkowski 2020). The context of this issue goes back to 2013 and the inclusion of “persistent complex bereavement disorder” in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), Section III, under “Conditions for Further Study” (American Psychiatric Association 2013). In 2018, the International Classification of Diseases—11th Revision (ICD-11) followed suit, defining “prolonged grief disorder” (PGD; WHO 2018). The typical course of grief involves a range of negative emotions, such as intense sadness, yearning, intrusive thoughts, and dysphoria, that are considered normal in this context (Goldstein 2018). These new definitions, however, classify grief as a disease where it meets certain criteria. This raises the question of whether we can regard prolonged grief disorder, as defined in ICD-11, as a mental disorder and whether and how it is distinguishable from “normal”, nonpathological grief.
Is prolonged grief disorder classifiable as a mental disorder?
Various discussions in the field of ethics—Klass et al. (1996), Archer (1999), Wilkinson (2000), Stroebe et al. (2008), Wakefield (2012), Wittkowski (2020)—have previously considered the question of whether, and under which circumstances, some courses of grief may be classifiable as “pathological”. In particular, the “bereavement exclusion”, one of the major changes made in DSM‑5, occasioned a wide-ranging debate around the potential for medicalization of grief arising from the diagnosis of people in mourning with major depressive disorder (Pies 2014; Searight 2014). The health status of grief had drawn the attention of ethicists prior to these discussions. One notable instance is the work of Stephen Wilkinson, who produced a detailed philosophical analysis arguing that we could regard even “normal” grief as a mental disorder. Inferentially, he suggested that his argument, rather than persuading us that grief is in fact a disorder, may instead encourage us to seek a more appropriate general theory of mental disorders (Wilkinson 2000). More than 20 years on from Wilkinson’s work, the field of psychiatry still lacks a consensus on the definition of mental health disorders (Svenaeus 2014; Wittwer et al. 2020). Among the various approaches to the concept of mental disorders is that of “harmful dysfunction” analysis as proposed by Jerome Wakefield (Horwitz and Wakefield 2007; Wakefield 2017), who set out two criteria, both of which a particular condition must meet in order to be classifiable as a “mental disorder”. The first of these is the presence of a dysfunction in some internal mechanism, that is this mechanism’s inability to perform one of its biologically designed functions. The second criterion is the harmful character of this dysfunction (Horwitz and Wakefield 2007). This would mean that a grief reaction that is helpful does not meet the threshold for consideration as a disordered state of mental health. We will proceed to discuss the positive value, or utility, of grief at a later stage of the paper. At this point, it suffices to note that in order to decide which courses of grief are disordered, it would be necessary to evaluate whether they are helpful.
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The definition of prolonged grief disorder in ICD-111 relates the health status of grief to the symptoms presented by the bereaved individual. It does not consider whether the grief reaction fulfills its purpose in that individual. It is possible to argue that a grief reaction associated with the level of emotional distress described in the ICD-11 definition is unlikely to be functional or helpful—an assumption to which we will return at a later stage in the paper, too. However, even if most patients diagnosed with prolonged grief disorder in accordance with ICD-11 indeed experience a grief reaction that does not fulfill the purpose of grief, the definition of prolonged grief disorder itself does not identify them by that means. Thus, this exemplary consideration of a specific approach to mental disorder raises questions as to whether the diagnostic criteria of prolonged grief disorder in ICD-11 enable us to differentiate bereaved people with normal grief reactions from those with grief reactions that fall into the category of a mental disorder.
Distinguishing prolonged grief disorder from normal grief
Various inherent properties of grief impede efforts to distinguish between its disordered and nondisordered stages. We will focus on two of these in the following. The first characteristic of grief we will consider in this context is its processual nature. Grief is not a single emotion in the way in which, for example, fear, sadness or despair are. Instead, we can describe it as an emotional process involving a broad range of different emotions (Cholbi 2015, 2019). As is well known, the typical grieving process does not simply decline in a linear fashion; rather it is subject to fluctuations in severity, intensifying, for example as relevant anniversaries approach (Boelen et al. 2018). The emotional status of a bereaved individual at a particular point in time does not necessarily mirror the actual burden of his or her grieving process over its full course, and its ascertainment in isolation may therefore result in the over- or underestimation of the overall level of emotional distress associated with the course of grief. Furthermore, this acute emotional status may lead a bereaved individual to present a biased evaluation of his or her symptoms over the days or weeks prior to this particular point in time. This impedes the assessment of the overall emotional burden of grief and of the symptoms linked to it and hamper any attempted evaluation of whether or not the grief reaction is helpful.
The second factor complicating the assessment of grief is the wide range of normal grief reactions and, crucially, the individual divergence the phenomenon entails (Wagner 2013). We can conceive of grief as a large series of emotional responses encompassing a broad variety of different emotions (Cholbi 2015). Asserting that the object of grief that evokes those emotions is not the death of a loved person per se, but the relationship thus transformed (Cholbi 2015, 2019, 2021), Michael Cholbi writes: “The emotional complexity of grief will therefore tend to mirror the normative complexity of the relationships whose disruptions are grief’s object” (Cholbi 2021, p. 247). Obviously, an individual’s grief response following the death of a colleague differs markedly from their grief response following the death of a sibling, a spouse, or even a child. The issue here is that the broader the range of normal grief reactions, the more difficult it is to determine whether a particular grief reaction is classifiable as pathological. Drawing on Michael Cholbi’s theory of grief’s object, we can state that the more complex the relationship between the deceased and bereaved individuals, the more complex the grief reaction (Cholbi 2021).
ICD-11 sets the minimum passage of time since loss, for the diagnosis of prolonged grief disorder, at 6 months. We would argue that this fails to fully recognize the unique challenges faced by bereaved parents (Morris et al. 2019). Furthermore, even disregarding the relationship between deceased and bereaved, there is no scientific evidence for the definition of a “normal” duration of grief (Kleinman 2012). This notwithstanding, the length of the grief response appears to be the central criterion in the definition of prolonged grief disorder. ICD-11 lists various symptoms that we can regard as qualitative diagnostic criteria for the condition. However, given the particular nature of grief, none of these applies exclusively to disordered grief; every symptom and emotion listed in ICD-11 can also occur in a “normal” course of grief. Acknowledging this circumstance, the ICD-11 states that the symptoms only constitute a disorder if they persist for an atypically long period of time. In other words, the duration of the grief response appears to be the decisive factor in the differentiation of prolonged grief disorder from normal grief. Given the variety of relationships among people and therefore of grief reactions, the validity of this criterion is highly questionable. ICD-11 partially acknowledges this problem in its reference to the social, cultural and religious context surrounding the bereaved individual in relation to the grief reaction’s duration. Distinguishing prolonged grief disorder from a “normal” course of grief, nevertheless, remains a challenge. There is a risk of overdiagnosis of the condition among particular groups of bereaved people, such as parents following child loss and of pathologizing individuals experiencing perseverative grief reactions following the loss of a close and complex relationship.
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Philosophical and ethical implications of pathologizing grief
The definition of prolonged grief disorder in ICD-11 focuses exclusively on the emotional burden of grief and does not take account of the entire spectrum of grief and its value. We would argue for a more differentiated and holistic view of grief, a phenomenon consisting in a broad emotional spectrum that encompasses both negatively—such as fear, sadness, anger or despair—and more positively valenced emotions, such as joy (Cholbi 2015). In our view, the inherent value of grief is worth protecting and we should avoid undermining it. We will seek to illuminate this inherent value by drawing on the normative evaluation of grief, proposed by Michael Cholbi, specifically his key contention that the complexity of grief is contingent upon the complexity of the relationship that existed between the bereaved and the deceased individuals. In Cholbi’s view, this complexity relates to our investment of our practical identity2 in the relationship—an identity that comes under threat when the loved one dies. The demise of an individual with whom we have a relationship brings about a forced ending to the relationship as it was and requires the bereaved person to rebuild the relationship with the deceased person incorporating the fact of his or her death. In order to do this, the bereaved individual needs to establish a revised practical identity which no longer assumes the living existence or availability of the deceased person (Cholbi 2015, 2019, 2021).
It is evident, from this theory, that some losses will engender more intense and long-lasting grief reactions than others. The manner and extent of the practical identity invested in the relationship in question may mean that death of one party of the relationship threatens the self-concept and the overall identity of the bereaved individual. Cholbi writes: “[T]he losses encountered in grief are often described not simply as losses to the self but as losses of self. For the grieving person is in the midst of an identity crisis rooted in the concurrent crisis in their suddenly evolving relationship with the deceased” (Cholbi 2021, p. 243). Losing a loved one with whom an individual had a close and complex relationship therefore confronts that individual with a corresponding degree of complexity in the task of revising their practical identity. This may in turn call—of necessity—for a grief reaction of greater intensity and longer duration.
This normative consideration of grief indicates that it is not simply an accumulation of emotions, most of which hold negative connotations. Instead, it appears to fulfill a purpose of existential importance to our lives, a view supported by Cholbi’s observation of grief often being described as somehow feeling “right” (Cholbi 2015). Despite the associated emotional distress, the bereaved individual, in grief, appears to acknowledge that this grief is an appropriate reflection of the harm caused to their life and identity by the loss. The grief reaction feels like the right and legitimate response to what has happened and appears to constitute an important part of the individual’s relationship with the deceased. Moreover, some bereaved people are able to gain a sense of the significance of their grief’s purpose. Describing his grief after his wife died of Alzheimer’s disease, the well-known US anthropologist Arthur Kleinman writes:
“My grief, like that of millions of others, signalled the loss of something truly vital in my life. This pain was part of the remembering and maybe also the remaking. It punctuated the end of a time and a form of living, and marked the transition to a new time and a different way of living. The suffering pushed me out of my ordinary day-to-day existence and called into question the meanings and values that animated our life. The cultural reframing—at once subjective and shared with others in my life-world—held moral and religious significance. What would it mean to reframe that significance as medical? For me and my family, and I intuit for many, many others such a cultural reframing would seem inappropriate or even a technological interference with what matters most in our lives” (Kleinman 2012, p. 609).
Cholbi describes the experience outlined here as part of the “paradox of grief” (Cholbi 2015, p. 5), which consists in, first, the premise that “[g]rief is (sometimes) good for us” (Cholbi 2015, p. 5), and, second, the fact that “[g]rief is (in part) an inherently distressing or painful condition” (Cholbi 2015, p. 5). In other words, a grief reaction can be “good”, in terms of fulfilling its purpose while still being painful to experience. The fulfillment of grief’s designated purpose does not necessarily correlate with the bereaved individual’s wellbeing at any specific point in the grieving process. This also means that a predominance of positively valenced emotions in the course of grief does not make grief “better”. The negatively valenced emotions that grief entails are equally involved in making grief “good” for us. Cholbi notes: “[A]n instance of grief is not necessarily improved by reducing its painfulness or increasing its pleasantness” (Cholbi 2015, p. 5). While it may be deleterious to our well-being at any particular moment in the grieving process, grief can indeed contribute to our future wellbeing. This is because grief does not only help us by fulfilling its designated function as described above. Grief can also enrich our lives in a different way. In Cholbi’s view, grief “enables us to develop moral virtue [and] achieve self-knowledge” (Cholbi 2015, p. 6), showing us who we are and what is important to us (Cholbi 2019). In light of this observation, Cholbi goes as far as to assert: “We should welcome the opportunity to grieve because the emotional complexity of grief makes it an especially fertile source of self-knowledge and self-understanding” (Cholbi 2019, p. 507).
As stated above, grief emerges from a disruption in our practical identities, which represent who we are and what has meaning in our lives (Cholbi 2021). Grief therefore illuminates the dependence of our wellbeing and our self-concept on other people whose existence and availability we cannot control. In doing so, Cholbi suggests, “grief alerts us to [a] threat to meaningfulness in our lives” (Cholbi 2021, p. 245). It is important at this juncture to specify that grief does not constitute this threat itself, but only reveals it. In fact, in Cholbi’s theory, grief even encourages us to enhance the meaningfulness of our lives. In an effort to deflect the threat to their life’s meaningfulness represented by the loss, the bereaved person seeks, as set out above, to establish a revised practical identity. This requires the individual to enter into an intense preoccupation with their relationship with the deceased and therefore with their own practical identity as it relates to the deceased (Cholbi 2021). Grief facilitates this preoccupation.
If we follow Cholbi’s proposal that grief is an outstanding instrument for facilitating the reflection on our life and its meaningfulness that a bereavement induces—helping us gain self-knowledge, restructure our self-concept, and find deeper meaning in our lives—we can access an enhanced understanding of the value of grief and its capacity to enrich our lives, and appreciate the quality of the grieving process, exactly the way it is, as worthy of protection. Prolonged grief disorder, by its current definition, on the other hand, entails the assessment of only the patient’s current and past emotional state at a particular point in time. In a bereaved individual currently undergoing a grief response, the nondesirable aspects of grief are very likely to predominate. If at least 6 months have passed since the bereavement, this individual’s condition may easily meet the diagnostic criteria of prolonged grief disorder, notwithstanding the fact that, at this stage, the desirable aspects of his or her grief have yet to manifest. Such a pathological perspective on grief risks medicalizing grief in terms of its “treatment”. It is the nondesirable aspects of grief that make us think of the grief reaction as pathological; accordingly, medical treatment is directed toward them. However, an understanding of the nature of grief as a sensitive, holistic phenomenon will indicate that it is impossible to eradicate some facets of this whole without changing its entire character. For instance, prescribing antidepressants to a bereaved person as a part of the treatment of prolonged grief disorder may relieve feelings of sadness, fear, and despair (Jordan and Litz 2014; Treml and Kersting 2018). In doing so, such intervention changes the pattern of the particular grief reaction that is in process, possibly to the extent of preventing the grief reaction from fulfilling its purpose and, at a later stage enriching the life of the bereaved individual in the way it would otherwise have been able to (cf. Blumenthal-Barby 2014). Intervening medically in the course of grief therefore holds two pre-eminent risks. First, it may hinder the bereaved individual’s process of establishing a revised practical identity, blocking their healthy incorporation of a loved one’s loss into their life. The risk here would appear to be the resulting emergence of an even more complicated and genuinely pathological course of grief. Second, medicalization may undermine the enriching effects grief can and, in its ideal course, should have in our lives. In taking away the emotional burden of grief, it may also lessen our chances of gaining self-knowledge and enhancing our self-concept through the process of mourning.
These considerations, while drawing on a holistic view of grief, focus exclusively on the bereaved individual him- or herself. If we wish to examine the wider ethical implications of pathologizing grief, we need to note the social context in which the grieving individual is necessarily embedded, and which will find itself affected, alongside the bereaved person, by a definition of a particular course of grief as disordered. Allan Horwitz and Jerome Wakefield assert that conditions that are considered nondisordered usually evoke responses among a person’s family and friends that differ from their responses to conditions regarded as pathological. Instead of receiving support from those around them, an individual may face hostility, stigmatization or rejection (Horwitz and Wakefield 2007). Work with bereaved parents has shown that many of them feel unable to meet the various social expectations around grief, frequently reporting criticism of the duration, intensity, and handling of their grief reactions on the part of family and friends. Such criticism, given the sensitive, intertwined nature of grief as set out above, is likely to affect the grief reaction. Comments like “Are you really still grieving?” or “If I had lost a child I would/would not do this or that” suggest that the bereaved individual’s particular way of grieving is “wrong”. Where a bereaved parent experiences such a discrepancy between their grief response and the expectations of those around them, the result may, depending on their relationships with the critical individuals and the significance of these relationships to their self-concept, cause the bereaved person to doubt the “rightness” of their grief reaction. This change in their attitude toward their grief response is likely to complicate the bereaved individual’s healthy experiencing and handling of their grief. Furthermore, such perceptions of an individual’s grief response on the part of those around them may diminish the support offered to them and induce isolation. It may cause further difficulties if support from the people around a bereaved person is understood as reducing the risk that this person will develop a difficult or—if described as such—a pathological grief reaction (Treml and Kersting 2018). These factors, or their combination may interfere with grief in a way that also prevents it from fulfilling its purpose and from enriching the life of the bereaved individual in the long term. Perceptions of a course of grief on the part of a bereaved individual’s family and friends generally predate any medicalization of the grief response as “pathological”. Medicalization, however, is likely to intensify such perceptions. The stronger the expectation on the part of others that grief will take a brief and “easy” course, the greater the probability that others will consider intense and perseverative grief responses “wrong”.
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Advance bereavement planning: An ethical option?
The level of persistent distress that may be associated with grief raises the question of potential support for these individuals, regardless of whether the course of their grief is defined as pathological. Concluding his considerations on whether “normal” grief constitutes a mental disorder, Wilkinson writes: “My own view […] is that answers to questions such as ‘What services, or compensation arrangements, should there be for grieving people?’ ought not to be determined by the health status of grief, but rather by the needs and the suffering of grieving people” (Wilkinson 2000, p. 304). In this spirit, we will now proceed to propose a potential instrument for the prevention of particularly difficult courses of grief. In what follows, the use of the term “difficult grief” refers to a grief reaction accompanied by particularly significant emotional distress, regardless of any diagnosis or otherwise as pathological. In outlining our proposal, we will use the example of parental grief. In view of the specific vulnerability of bereaved parents in this context, we believe the proposed instrument for preventing difficult grief may be of particular benefit to this group.
High vulnerability of parents after child loss
We will first set out why we consider bereaved parents vulnerable in this context. Known risk factors for difficult grief reactions include the following: an unnatural death; a strong attachment to the deceased person and a close relationship between the deceased and the bereaved individuals; the death of a child or of a person of younger age; pre-existing psychological morbidities; the unpredictability of a death, with a concomitant lack of preparation for the loss; sudden and/or traumatic death; hospital-based death and the existence of unresolved interpersonal issues; alongside a lack of bereavement support and the bereaved individual’s inability to find meaning in the death (Goodenough et al. 2004; Lobb et al. 2010; Goldstein 2018; Morris et al. 2019). Numerous aspects of the death of a child are among these risk factors and therefore predictive of a difficult grief reaction (Goldstein 2018; Morris et al. 2019). One example is the close relationship between parent and child and the particularly strong parent–child attachment bond on which parenthood itself is founded, as meeting a child’s needs defines a parent’s self-concept and self-worth (Goldstein 2018). If we follow Cholbi in considering the object of grief to be the transformation of the relationship following the death, we are able to note the impact of the pattern of the relationship on grief (Cholbi 2015, 2019, 2021). The death of the child plunges the relationship into crisis and forces the parent to rebuild the relationship. Essential elements of the relationship, such as caring for the child and protecting them from harm, are no longer accessible to the parent after the child’s death. This effective destruction of the relationship’s foundations makes its rebuilding a particular challenge.
Severe disease in children is often accompanied by high levels of prognostic insecurity and the potential for unpredictable and rapid deterioration (Zernikow and Nauck 2008), which may leave issues unresolved and parents unprepared for bereavement. Furthermore, the likelihood of “unfinished business” between parents and their children is high as many commitments and expectations of parents toward their children revolve around the future. Parents consider it their responsibility to raise their children and provide them with support into adulthood. The death of a child leaves parents unable to meet this envisaged responsibility and deprives them key events, milestones, and celebrations they had expected to experience, such as birthdays, first days at kindergarten or school, important religious events such as First Holy Communion, bar/bat mitzvah, or confirmation, the child’s entry into their first romantic relationship, graduation, and so on. Such hopes for the future, essential components of the parent–child relationship, are thwarted by death, which means that the transformation of the relationship during the grieving process entails the acknowledgement of their permanent loss. Grief, in this instance, therefore means mourning both for what we had and for what we had hoped for (Cholbi 2021).
The reversal of the normal course of life inherent in the death of a child prevents the bereaved parent from finding any meaning in the event (Burkhard and Renz 2006). Parental grief “is well documented to be more intense, complicated, and long-lasting, with huge fluctuations over time in comparison to grief related to any other type of loss” (Goldstein 2018, p. 148). A further reflection of the exceptional complexity characterizing parental grief is the finding of its correlation to a significant increase in physical and mental health problems and even mortality (Morris et al. 2019). Bereaved parents are therefore at higher risk of difficult grief than is the general bereaved population, as well as being susceptible to inaccurate diagnosis with prolonged grief disorder should their grief reaction, compared to that found in other types of loss, be judged pathological. We may, in this context, indeed consider whether the unique circumstances of parental grief qualify it as a distinct subtype of grief (Morris et al. 2019). In light of these observations, we consider bereaved parents a highly vulnerable group in all respects of this issue (Bergemann and Frewer 2018). Beneficial effects of pediatric palliative care on the course of parental grief may therefore serve as a model potentially applicable to other populations.
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An ethical task: preventing difficult grief through pediatric palliative care
While accidents are a common cause of death in childhood and some health-related child deaths are very sudden, it may be the case that a serious and possibly lengthy illness precedes the death of a child. In these cases, pediatric palliative care should be able to reach out to the family prior to the loss.3 Due to the fact that our proposed instrument for preventing complicated parental grief is designed as a beneficial extension of palliative care in the specific pediatric case, we will, before proceeding to outline our proposal, illustrate the positive effects on grief pediatric palliative care is currently known to have. In the spirit of its definition as set out by the WHO, as “the active total care of the child’s body, mind and spirit” (WHO 1998) and as support for his or her family, this intervention may provide opportunities to prevent difficult parental grief. Pediatric palliative care should be commenced when illness is diagnosed and continued regardless of whether a child is receiving treatment for the disease (WHO 1998). This care involves the assessment and alleviation of the child’s physical, psychological and social distress; effective “palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources” (WHO 1998).
Palliative care attends to the patient from diagnosis on, throughout the whole course of disease, an approach unusual among the various fields of medicine. This continuity of care facilitates an early and assisted process of reorientation for the family facing the situation of having a sick child or sibling at risk of, or in the process of, dying. It has been shown that a high level of continuity of care at the end of the child’s life is associated with less long-term grief (van der Geest et al. 2014; Morris et al. 2019). Whereas conventional grief counseling and bereavement care commence after loss, pediatric palliative care seeks to provide professional support to the family prior to death. The importance of early and ongoing support cannot be overestimated, particularly where a child undergoes a long process of progressive deterioration, as may happen, for example, in various neurodegenerative diseases or in brain tumors. The ensuing anticipation of the child’s death induces a number of individual emotional and behavioral responses in members of the family, with associated impacts on their well-being and the dying child’s emotional state. Like relatives of people with dementia, they may, for example, experience anticipatory grief that, if unresolved, is associated with negative bereavement outcomes (Cheung et al. 2018). There is great potential for further research and ethical discussion in matters such as the potential impact on a dying child of their family grieving their loss while they are still alive and in need of the family’s care and support. This paper cannot embark on detailed discussion of these issues, beyond observing that such complex and sensitive matters point to the great need for and benefits of professional support for families during the difficult time they endure prior to loss. The support provided by pediatric palliative care may make the process of preparing for the child’s death somewhat more straightforward and help families to cope with the associated emotions.
Palliative care teams are multiprofessional and can therefore often provide additional psychological support during the child’s illness. This can help to improve the bereavement outcome, as can the opportunity to attend “closure sessions” after the child’s death (Kreicbergs et al. 2007). Pediatric palliative care beyond death (Führer and Zernikow 2005) means that professionals who are already well-known to the family provide grief counseling, relieving parents of the task of building a new relationship during the acute grief response and helping manage or eliminate the risks of a lack of support before and after the death.
Some countries, such as Germany, have a funding and remuneration system for pediatric palliative care separate from that used for other clinical settings; this results in the availability of ample resources and time for professionals to care for the child alongside supporting the family in coping with their situation and the requirements of their child’s disease. Systems such as these allow a detailed assessment of the child’s and the family’s needs, resulting in a more effective and successful alleviation of symptoms. Bereaved parents whose children suffered less from dyspnea, anxiety, anger, and uncontrolled pain and parents who reported that their own needs were better met at the end of their child’s life, have been found to have lower levels of emotional distress in the time of mourning (van der Geest et al. 2014; Morris et al. 2019). In other words, a greater availability of time and intense care preceding the death of a child can also help prevent difficult parental grief. Such care improves the whole family’s quality of life, strengthens the family members’ autonomy, and relieves the pressure on their time and energy (Lutz et al. 2018). This may be conducive to a family’s finding “meaning” in their child’s shortened life. In addition, pediatric palliative care reduces instances of hospitalizations throughout the course of the disease and sometimes enables the child to die at home, which also seems to alleviate distress in grief (Goodenough et al. 2004; Zernikow and Nauck 2008; Morris et al. 2019).
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One essential component of pediatric palliative care is pediatric advance care planning. This facilitates communication of health care professionals with the family and decision-making; families who engage in it may experience a less overwhelming emotional burden (Lotz et al. 2013). To our knowledge, a scientific study of the specific effects of pediatric advance care planning on bereavement outcomes has yet to take place, a lacuna which calls for appropriate research. As far as we can tell from experience, the extensive, thorough and continuous discussions associated with advance care planning appear to give parents a sense of security and control and help them feel a greater sense of preparedness (cf. Lotz et al. 2014), which is known to reduce the risk of difficult grief (McCarthy et al. 2010; van der Geest et al. 2014; Treml and Kersting 2018; Morris et al. 2019). Furthermore, these discussions break the “taboo” around a child’s dying and death. This may facilitate improved communication within the family, which is correlated with less severe outcomes of the bereavement process (Kreicbergs et al. 2007).
Currently, pediatric palliative care often does not begin until death is drawing close. Only 54.5% of pediatric oncology patients receive palliative services prior to death (Cheng et al. 2019). If pediatric palliative care is to realize its preventive potential, its early incorporation into the child’s care—ideally, as the WHO suggests, directly following diagnosis—is essential (WHO 1998). As a further measure to reinforce and extend the beneficial effects of pediatric palliative care on grief, we propose to incorporate what we call “advance bereavement planning” into the pediatric palliative care process. This component of care will seek to prevent difficult grief by focusing, alongside the child patient, on his or her family, whose well-being is strongly correlated with the quality of the care the patient is receiving.
The concept of advance bereavement planning
The idea of advance bereavement planning, in correspondence to advance care planning, is to serve as a beneficial extension of palliative care in the specific pediatric context. It is crucial to state, first of all, that the name “advance bereavement planning” is not meant to suggest that grief is predictable. Like the course of most diseases, the course of grief evades schematic planning. Among the aims of the established practice of advance care planning is to discuss potential turns in the course of the disease with the patient and his or her family and to register their views and wishes in that regard. In a similar manner, the purpose of advance bereavement planning would be to address potential courses of grief and attempts to identify the future needs of families facing bereavement and potential routes to meeting them. It aims to stabilize those anticipating bereavement and help them cope with the many emotional states that grief entails. The central aim of advance bereavement planning is to alleviate suffering without interfering with the grief reaction. It does not aim to suppress grief or shorten its course, but rather to support people who will go through bereavement when they undertake the forced transformation of their relationship with the person they will lose. Its intent is not to undermine grief’s value, but instead to assist grief’s purpose, to which end it proceeds from a holistic conception of grief as a healthy and important process in the life of someone who has suffered loss. Such a holistic and cause-related view makes it necessary to identify the factors that cause grief to evolve in a certain way. Stephen Wilkinson suggests that normal grief may be seen as some kind of “mental injury” (Wilkinson 2000). Michael Cholbi, by contrast, considers it misleading to speak of grief as a “wound” or an “injury”. He cautions against confusing the source of grief with grief itself. In his view, the death of a loved one imprints an injury on the meaningfulness of our lives. Grief results from this injury without being a wound or an injury itself (Cholbi 2021). According to this view, the source of grief is an injury caused by the death of a loved one. Of course, the death itself is unchangeable and therefore not amenable to a cause-related approach to grief. There appear, however, to be many relevant circumstances surrounding the death of a loved one that may affect the way the grief reaction unfolds. A preventive approach may be able to address these.
In our view, advance bereavement planning can address some of the additional circumstances relevant to the grief reaction which pediatric palliative care processes do not address, or do not address wholly. These may include parents having acquired a helpful understanding of what grief is, their awareness of and access to grief counseling, preparedness for grief, or preparations for the time of grieving. Advance bereavement planning could beneficially expand the preventive character of pediatric palliative care in addressing these additional causative circumstances surrounding death.
We propose advance bereavement planning as an integral component of pediatric palliative care, delivered by an interdisciplinary team and offered to families with critically ill children. Part of the purpose of advance care planning is to facilitate communication within the family and between health care professionals and the family, and to break the “taboo” surrounding the impending death. The purpose of advance bereavement planning is to expand this communication and break the additional “taboo” around talking about the time after the death. Furthermore, it provides the family with a conception of grief that is useful to them and discusses with them possible courses of grief and the accompanying emotional states. To these ends, advance bereavement planning encompasses three fundamental elements: psychoeducation, preparatory grief counseling, and the establishment of internal and external support mechanisms for the family.
The first of these, psychoeducation, aims to impart awareness of what grief is. It seeks to help parents to gain an understanding of the processual character of grief, of its broad emotional spectrum, and of the wide range of normal grief reactions. This may, for example, prepare parents for the fact that different family members often grieve differently, a circumstance that can cause conflict within families. It is also important for families to understand that the intensity of grief does not decline in a linear fashion, but rather fluctuates over time. Furthermore, psychoeducation as part of advance bereavement planning may provide information on social perceptions of and attitudes toward grief and their potential to cause conflicts among family and friends, enable parents to understand the risk factors and protective factors for difficult grief, and supply details of support services for people in mourning.
The second element of advance bereavement planning is preparatory grief counseling which is intended to build on the knowledge families attain through psychoeducation. This may, for instance, involve exploring the parent’s individual risk factors for difficult grief and potential ways of reducing this risk. Another focal point may be identifying the parent’s perceptions of and mindset around grief, which can possibly entail considering their prior experiences with grief and their expectations of their mourning in relation to its duration, intensity, and fluctuations and to how they expect to handle various important areas of life during this period. This will help create a sense of how the parent intends to approach their grief. The counseling also represents an opportunity to address the parents’ specific wishes around the death of their child. Many of the circumstances surrounding death, such as where it will take place and how the child will be cared for, are already part of advance care planning. Advance bereavement planning can engage with additional factors, such as the involvement of friends and family and the arrangements for the hours and days following death. This provides an opportunity to take important decisions in advance. One example in this regard emerges in the research finding that parents who were able to have their child’s body at home for viewing experienced less distressing levels of grief (Wijngaards-de Meij et al. 2008; Morris et al. 2019). It appears important for parents to be aware of those possibilities in order to have access to ways of handling the situation that feel right to them. Other examples may be the opportunity to have last pictures taken or to wash and dress the deceased child with the help of a family member. Many of these possibilities are unique to the particular point in time immediately following death and cannot be made up for later. If parents are aware of them, they may be able to access precious moments and memories that can have a positive influence on the grieving process later on.
The third element of advance bereavement planning is the establishment of internal and external support mechanisms around the family. Internal support mechanisms have the potential to help parents during their grief journey; this might entail, for example, making special memories while the child is still alive that can help sustain the parents during the course of grief, or creating items with a symbolic character, such as a work of art made with the child. This component of advance bereavement planning further aims to create an external support system to help the parents as they go through their grief. Discussions around external support mechanisms may involve considering the role family and friends could play in the period around the death of the child or in the time of mourning. Parents can be encouraged to take decisions on matters such as which person could help with specific tasks following death, such as funeral arrangements and official paperwork. Involving family and friends in this way, immediately around the death and in the further course of grief, may reduce the risk of isolation to the parent. After the death of a child, family and friends may not know how to help or what to say to the bereaved parent; many may respond to this uncertainty by withdrawing from the parent, in order to avoid saying or doing something “wrong”. The facilitation of open and honest discussions with family and friends as part of advance bereavement planning can mitigate this risk. Furthermore, parents should be encouraged to gain a sense of their needs and articulate them to people that might be able to help. The planning of external support mechanisms can additionally assess possibilities for establishing or reinforcing other stabilizing elements in the parent’s life. Prior to death, the child’s medical needs will have consumed much of the parent’s time and attention, possibly pushing out other foci; it may therefore be helpful to the parent to consider in advance the incorporation of new or previous activities or commitments into their lives during their grieving journey. This may, for instance, entail finding new or reactivating old hobbies or joining a group or society. Advance bereavement planning should further seek to ensure that parents retain uncomplicated access to various support services for bereaved people in general or grieving parents in particular; it should involve the provision of specific contact details and of awareness around routes to finding help where needed. Parents should be amply encouraged to make use of support services such as self-help groups for bereaved parents, grief counseling, and psychotherapy for the parent, the couple, or the whole family.
Challenges and future research
We believe that our concept of advance bereavement planning will benefit from evaluation, further detailed consideration, and a continuous process of interdisciplinary discussion. We recommend further research for the identification of factors that reduce the risk of difficult grief reactions to the end of their potential incorporation into advance bereavement planning and, more broadly palliative care in general. Future research will need to address the question of whether advance bereavement planning is able to achieve its designated aim of helping bereaved individuals without interfering with their course of grief and therefore undermining the value of grief. We further note the necessity of careful consideration around which families should receive the directly offered services that are part of advance bereavement planning. Where a child’s treatment is still curative in intent mentioning bereavement can hold the risk of causing harm or even constituting discrimination (principle of nonmaleficence, cf. Beauchamp and Childress 2019). In such cases it may be useful to regard advance bereavement planning more as a part of advance care planning that is not communicated to the child patient and his or her family. But even where there is no hope for a child’s recovery from their illness, all elements of advance bereavement planning require careful and empathetic communication if they are to meet their beneficial potential and not cause harm to the dying child and the family. Determining the appropriate time and manner of incorporating advance bereavement planning into the care of a specific family may constitute one of the major challenges of this concept. While one parent may wish for direct and honest communication, the other may prefer not to discuss these matters at this stage, and may not be ready to break the taboo around experiencing and grieving the death of his or her child. Understanding and meeting the different (and changing) needs of all family members throughout the course of the disease, can be very challenging. Adjustments to the concept of advance bereavement planning may also be of necessity when it addresses other family members besides the parents, such as siblings, grandparents, or other close relatives. Each of these family members will have a unique relationship with the seriously ill or dying child and a unique place within the overall structure of the family, both of which will affect the manner in which they can engage with and benefit from advance bereavement planning. A sibling, for example, will require age-appropriate communication. A family member whose attachment bond to the child is less close than that of their parents may benefit from other aspects of advance bereavement planning and different styles of its communication than will the parents themselves.
We believe that, proceeding from the special case of pediatric palliative care and parental grief, further research around these issues and consideration of the concept could pave the way for advance bereavement planning to constitute a beneficial addition to palliative care in various settings. The application of the concept to palliative care in general will, however, require adaptation. Adult palliative care is distinct from pediatric palliative care in various ways; one of them is the generally rather late implementation of the former, as compared to the latter, in the course of the disease. While this may facilitate the breaking of the taboo around the impending loss and grief reaction, it may also present a challenge as regards providing the time and resources for the advance bereavement planning process. This shows the complexity of the practice for the new ICD with grief as a “disease” and the necessity of adequate individual and social handling of bereavement. It is a crucial question of reflection for best practice and ethical culture in medicine.
Acknowledgements
Our thanks go to Dipl.-Psych. Silvia Schäfer, the EFI Research Group “Human Rights in Healthcare” and the Graduate School on Human Rights and Medical Ethics for Elderly (Josef und Luise Kraft-Stiftung) for helpful conversations and feedback.
Declarations
Conflict of interest
R. Lutz, C. Eibauer and A. Frewer declare that they have no competing interests.
Ethical standards
For this article no studies with human participants or animals were performed by any of the authors. All studies mentioned were in accordance with the ethical standards indicated in each case.
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