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Complicated grief: An introduction to current literature and management strategies in home hospice care

Ong Eng Koon

Division of Palliative Medicine, National Cancer Centre Singapore, Singapore

E-mail : aa

Patricia Neo

Division of Palliative Medicine, National Cancer Centre Singapore, Singapore

DOI: 10.15761/NPC.1000135

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Abstract

Palliative care involves the holistic care of both patients and their families in all aspects of physical, psychosocial and spiritual care, including bereavement care.  However, the development of guidelines and guideline-based clinical practice on bereavement support in home hospice care is in its nascent stage locally.  There is an urgent need to standardize how bereavement support is being practised and ensure high-risk caregivers with complicated grief are supported adequately.  In addition, there is increasing interest in this topic as more patients come under the care of non-palliative specialists providing medical care in patients’ homes. This commentary will present the existing concepts of normal grief and complicated/persistent complicated bereavement disorder (PCBG) in bereaved individuals.  Areas discussed will include anticipatory grief assessment, diagnosis of complicated grief and suggested follow-up for caregivers with complicated grief in home hospice care.

Introduction–bereavement support in home hospice care

Locally, the practice of palliative medicine care can be found in the settings of restructured hospitals, inpatient hospices, hospice day care and home hospice care.  In home hospice care, the patient and caregivers are visited in their homes by specialist palliative teams.  This allows physical and psychological care to be provided in their preferred place of care at home.  Patients referred to a home hospice service generally have an estimated prognosis of not more than 1 year. 

The home hospice team, comprising of doctors, nurses and medical social workers, visits the patient on a regular basis and provides a 24-hour helpline outside office hours. In our local setting, grief and bereavement risk assessment is usually performed by the multidisciplinary team. The follow-up and intervention may be primarily served by the medical social workers or any member of the team with better rapport with the patient or caregivers.  In other countries, a similar model of care exists, with clinical guidelines commonly recommending a multidisciplinary approach to improve outcomes. These includes better communication, effective palliative care and sufficient forewarning of impending death [1-3]. Patients or caregivers who need more complex grief support are visited as frequently as possible, leaving the caregiver responsible for the patient’s care in between visits by the team.  This presents additional challenges when there is a risk of complicated grief for the caregiver himself.  

In 2012, the National Strategy for Palliative Care in Singapore was published to guide the local medical community in caring for patients with life-limiting diseases.  Its main goals include achieving standards of care and to ensure that all healthcare professionals are able to use the palliative approach while managing patients [4]. Subsequently, the National Guidelines for Palliative Care was published in 2015 to improve the standards of palliative care in Singapore.  It lists bereavement care as one of its core 13 guidelines important for good palliative medicine practice [5]. The management of complicated grief by both home hospice teams and non-specialists (including general practitioners) doing home visits needs to be explored and implemented in an efficient manner as much as possible.

Discussion

Definition and theories on grief and bereavement

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) defines bereavement as the state of having lost through death someone with whom one has had a close relationship [6]. This state includes a range of grief responses and reflects the varied ways that bereaved caregivers react to the death of their loved ones. Grief can be a normal reaction to the inevitable life experience of losing a loved one to death [7]. However, there can be associated pathological psychological states during bereavement including PCBG. These warrant careful assessment and diagnosis with subsequent specialised management [6,8]. Bereaved family members and caregivers have been known to have poorer health outcomes compared to their non-bereaved counterparts [9-11]. Suicide risk is also increased in the bereaved. Thus it is important to assess the risk of such pathological states before the eventual death of the patient [12,13].

Various theories have been used to describe the grieving process.  Elizabeth Kubler-Ross proposed the 5 stages of normal grief in 1969 in her book “On Death and Dying” [14]. These include denial, anger, bargaining, depression and acceptance.  Bowlby described grief in terms of phases of shock, yearning and protest, despair, and recovery [15]. Worden described the process as a series of tasks, namely to accept the reality of the loss, work through the pain of grief, adjust to an environment in which the deceased is missing and to emotionally relocate the deceased and move on with life [16].

The manifestations of grief can be classified into affective, cognitive, behavioural, physiological-somatic and immunological and endocrine changes (Table 1) [6,17,18].

Table 1.  Manifestations of bereavement [1,12,13]

Affective

Cognitive

  • Depression, despair, dejection, distress
  • Anxiety, fears, dreads
  • Guilt, self-blame, self-accusation
  • Anger, hostility, irritability
  • Anhedonia—loss of pleasure
  • Loneliness
  • Yearning, longing, pining
  • Shock, numbness
  • Preoccupation with thoughts of deceased, intrusive ruminations
  • Sense of presence of deceased
  • Suppression, denial
  • Lowered self-esteem
  • Self-reproach
  • Helplessness, hopelessness
  • Suicidal ideation
  • Sense of unreality
  • Memory, concentration difficulties

Behavioral

Physiological-somatic

  • Agitation, tenseness, restlessness
  • Fatigue
  • Overactivity
  • Searching
  • Weeping, sobbing, crying
  • Social withdrawal
  • Loss of appetite
  • Sleep disturbances
  • Energy loss, exhaustion
  • Somatic complaints
  • Physical complaints similar to deceased

Immunological and endocrine changes

  • Susceptibility to illness, disease, mortality

Anticipatory grief assessment

It is widely recognized that bereavement support does not begin only after the death of the patient as high levels of anticipatory grief. A low preparedness for the patient’s death can be associated with poor bereavement outcomes [19]. The assessment for the risk of complicated grief should thus commence with the involvement of the palliative team. Subsequently different levels of resources can be considered according to the level of needs of the bereaved caregivers [20,21].

Assessment for complicated grief includes thorough clinical evaluation of the caregiver. This includes, the history of the disease of their loved ones as well as the caregiver’s own social, psychiatric and family history and circumstances.  This is then supplemented by various screening tools including the Prolonged Grief-12 (PG-12) and the Bereavement Risk Assessment Tool (BRAT) [22,23]. After the patient dies, the Brief Grief Questionnaire, which is a five-item self-reported questionnaire that asks about difficulty in accepting the death, impaired functioning secondary to grief, disturbing images, or thoughts of the death, avoiding things related to the deceased and feeling cut off or distant from people can be used. The Inventory of Complicated Grief, which assesses the frequency of emotional, cognitive and behavioral responses to death, is another tool [24,25].

In clinical practice, the issue of suicide risk assessment and intervention should also be addressed.  The bereaved caregiver should be interviewed for any history of suicidal ideation or attempts and psychiatry disorders like depression or substance.  Together with assessment of protective and risk factors of complicated grief as mentioned above, a general assessment of the risk of self-harm and suicide can be ascertained.

Complicated grief

Complicated grief has been defined as a deviation from the normal (in cultural and societal terms) grief experience in either time course, intensity, or both, entailing a chronic and more intense emotional experience or an inhibited response, which either lacks the usual symptoms or in which onset of symptoms is delayed [10,26]. These may include various psychiatric symptoms ranging from depression to psychotic disorders.

Various authors have attempted to come up with diagnostic systems for complicated grief [10,11,27]. The DSM-5 has included persistent complex grief disorder (PCGD) under Conditions for Further Study with explicit criteria (Table 2) [9]. Notably, in all these definitions, time of bereavement (12 months) is an essential criterion.

Table 2. DSM-5 diagnostic criteria for persistent complex grief disorder

Criterion A. The individual experienced the death of someone with whom he or she had a close relationship.

Criterion B.  Since the death, at least one of the following symptoms is experienced on more days than not and to a clinically significant degree and has persisted for at least 12 months after the death in the case of bereaved adults and 6 months for bereaved children:

  1. Persistent yearning/longing for the deceased.  In young children, yearning may be expressed in play and behavior, including behaviors that reflect being separated from, and also reuniting with, a caregiver or other attachment figure. 

  2. Intense sorrow and emotional pain in response to the death. 

  3. Preoccupation with the deceased. 

  4. Preoccupation with the circumstances of the death. In children, this preoccupation 
with the deceased may be expressed through the themes of play and behavior and may extend to preoccupation with possible death of others close to them. 


Criterion C.  Since the death, at least six of the following symptoms are experienced on more days than not and to a clinically significant degree, and have persisted for at least 12 months after the death in the case of bereaved adults and 6 months for bereaved children:

Reactive distress to the death

  1. Marked difficulty accepting the death. In children, this is dependent on the child’s capacity to comprehend the meaning and permanence of death. 

  2. Experiencing disbelief or emotional numbness over the loss. 

  3. Difficulty with positive reminiscing about the deceased. 

  4. Bitterness or anger related to the loss. 

  5. Maladaptive appraisals about oneself in relation to the deceased or the death (e.g., 
self-blame). 

  6. Excessive avoidance of reminders of the loss (e.g., avoidance of individuals, 
places, or situations associated with the deceased; in children, this may include avoidance of thoughts and feelings regarding the deceased). 


Social/identity disruption

  1. A desire to die in order to be with the deceased. 

  2. Difficulty trusting other individuals since the death. 

  3. Feeling alone or detached from other individuals since the death. 

  4. Feeling that life is meaningless or empty without the deceased, or the belief that one cannot function without the deceased.
  5. Confusion about one’s role in life, or a diminished sense of one’s identity (e.g. feeling that a part of oneself died with the deceased). 

  6. Difficulty or reluctance to pursue interests since the loss or to plan for the future (e.g., friendships, activities).

Criterion D.  The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.

Criterion E.  The bereavement reaction is out of proportion to or inconsistent with cultural, religious, or age-appropriate norms.

Despite description of PCGD as a distinct entity from other psychological disorders including depressive disorder or anxiety after bereavement, the application of such diagnostic criteria may be difficult in clinical practice. For example, to diagnose a caregiver as suffering from PCGD, it would require a consistent bereavement follow-up of at least 12 months.  Local palliative services generally only support bereavement for 3 to 6 months before referring care to community services if required.

Beyond relying on the diagnostic criteria for complicated grief, the various screening tools listed above can further assist in the risk assessment of the bereaved caregiver. In addition, Stroebe, Schut and Stroebe in their review paper summarized risk and protective factors for complicated grief into situational and circumstances of death, intrapersonal factors, interpersonal or non-personal resources and protective factors and coping styles and strategies and processes of the bereaved [6]. Other predisposing factors of complicated grief include an insecure and dependent relationship, unresolved family crisis, and perceived deterioration and disfigurement of the patient [28].

Using the above framework, there are some protective factors that are commonly seen in the practice of home hospice care (Table 3).  These include adequate preparation of the patient and caregiver of progressive deterioration and imminent death, control of symptoms during the end of life and addressing the spiritual needs of both the patient and caregiver alike – interventions which are often possible when there is good rapport between the home hospice team and the caregiver. 

Table 3.  Risk and protective factors of complicated grief [1]

Risk Factors

Protective Factors

A.  Situation and circumstances of death.

1.  Stress of caregiving.

2.  Presence of concurrent stressors including financial strains, family conflicts.

1.  Death was not sudden or traumatic.

2.  No extreme symptomatic distress before death.

B.  Intrapersonal factors.

1.  Lack of protective personality factors like optimism, perceived control over daily activities, high self-esteem; secure attachment styles in relationships with others.

2.  Pre-bereavement depression?

3.  Widowers more vulnerable than widows.

-

C.  Interpersonal or non-personal resources and protective factors.

1.  Social isolation.

D.  Coping styles, strategies, processes.

1.  Rumination.

1.  Meaning-making.

Psychological models

Traditionally, bereavement work had focused on confronting the reality of loss and relinquishing the bond to the deceased person [29]. The models proposed by Kubler-Ross, Bowlby and Worden respectively describe the processes that the bereaved person should go through to accept the reality of the loss and redirect their emotional distress.  Walters explored continuing bonds, emphasizing the importance for the living of interpreting the memory of the dead into their ongoing lives and recognizing their enduring influence [30].

The dual model of coping illustrates that positive and negative cognitions with consequent regulation of emotions of the bereaved person is a more important and realistic process that the bereaved individual goes through.  In this model, the bereaved person oscillates frequently between confrontation (restoration-orientated) and avoidance (loss-orientated) of both the death event and secondary stressors such as dealing with financial difficulties (Figure 1) [31]. Ideally, the bereaved person becomes more restoration-orientated over time.  For example, a bereaved caregiver may oscillate between rumination of the death of a loved one but still pick up a new hobby at the same time.  Eventually, the time involved in the new hobby and interests increase, reducing time spent on rumination.

Figure 1. Dual model of coping in bereavement [26]

Management strategies

The National Guidelines for Palliative Care recommends that all bereaved caregivers should be provided with practical information on issues like funeral arrangements and legal post-death matters.  There should also be a system of identifying and referring caregivers at risk of complicated grief to a higher level of bereavement support services [5].

Various other guidelines on grief assessment and methods of bereavement support have been described, including meditation, individual counselling and memorial services [32-35]. Notably, acute typical grief does not require intervention and support from family, friends and clergy is usually adequate [36,37].

Psychotherapy has not been proven to provide significant benefit in prevention of complicated grief or depressive symptoms for normal grief [38-40]. Studies into current grief counselling interventions also seem to be of a poor quality [41]. However, there is some evidence for family-focused therapy and psychotherapies adapted for complicated grief [39,42]. Cognitive behavioral therapies (CBT) can be administered individually or as a group and even over the Internet.  Techniques used include methods adapted like interpersonal psychotherapy, and motivational interviewing [33,43,44].

In home hospice care, the existence of any of the above-mentioned risk factors should alert the hospice team regarding the potential development of complicated grief.  Table 2 lists possible specific scenarios that the team may encounter in the bereaved individual.  Management of these at-risk caregivers will entail early support and preparation of the caregiver for the patient’s death. 

We suggest a 3-pronged approach to support the caregiver.  Firstly, practical interventions that can be implemented by the home hospice team include placement of emergency telephone numbers in areas of the house that are eye catching and easily referred to.  These contacts can include telephone numbers of the home hospice nurse as well as family members who are living nearby. The caregiver can be reassured that the phone call will be attended to at any time of the day.  This prevents impulsive actions of self-harm during acute episodes of stress which the caregiver may experience.

Secondly, concurrent preparation of the caregiver for the imminent death of the patient should be initiated.  This includes consistent updates on the patient’s deterioration, common symptoms of dying, medications used for the treatment of these symptoms, and the monitoring of the effects and side effects of the medications used.  This helps to empower the caregiver with the knowledge of the care provided during the end of life of the patient and allays doubts and concerns.  At the same time, the caregiver is also assured that the patient is kept comfortable whilst dying.  

Thirdly, the home hospice team as well as volunteers can work together to engage and encourage the bereaved to prepare for a meaningful life after the death of a loved one.  This includes drawing in community resources to minimize social isolation, improve financial stability and optimize coping strategies for the individual.  

Looking forward

Currently, the practice of having a multi-disciplinary team in palliative care enables a wider perspective of the needs of the caregivers and draws on the varied skills of the multidisciplinary team.  The practice of routine mortality review after patients’ death allows the team to discuss the risk of complicated grief and need for closer bereavement support.  However, there are currently no local guidelines regarding the use of a standardized screening tool for complicated grief both before and after a patient’s death that would allow objective stratification of the risks and needs of the caregiver.  The best time to administer such a screening tool has also not been determined. Research into guidelines locally to provide a cost-effective and appropriate bereavement support plan according to needs will be helpful in the management of similar cases in the future. 

Conclusion

Grief and bereavement are common issues in the practice of palliative medicine.  While majority of the bereaved can cope with minimal support from clinicians who provide general information and resources during bereavement, the possibility of complicated grief should be considered in individuals with risk factors.  This allows timely intervention to prevent complications like suicide or depression.  The process of coping with grief is dynamic and a spectrum of outcomes based on the individual’s characteristics and circumstances is likely.  Further research is required to enable a more systematic and evidence-based approach to the support of the bereaved. 

Reference

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Editorial Information

Editor-in-Chief

Article Type

Research Article

Publication history

Received date: November 11, 2016
Accepted date: December 09, 2016
Published date: December 12, 2016

Copyright

©2016 Koon. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Citation

Koon OE (2016) Complicated grief: An introduction to current literature and management strategies in home hospice care. Nurs Palliat Care 1: doi: 10.15761/NPC.1000135

Corresponding author

Ong Eng Koon

Division of Palliative Medicine, National Cancer Centre Singapore, Singapore

Table 1.  Manifestations of bereavement [1,12,13]

Affective

Cognitive

  • Depression, despair, dejection, distress
  • Anxiety, fears, dreads
  • Guilt, self-blame, self-accusation
  • Anger, hostility, irritability
  • Anhedonia—loss of pleasure
  • Loneliness
  • Yearning, longing, pining
  • Shock, numbness
  • Preoccupation with thoughts of deceased, intrusive ruminations
  • Sense of presence of deceased
  • Suppression, denial
  • Lowered self-esteem
  • Self-reproach
  • Helplessness, hopelessness
  • Suicidal ideation
  • Sense of unreality
  • Memory, concentration difficulties

Behavioral

Physiological-somatic

  • Agitation, tenseness, restlessness
  • Fatigue
  • Overactivity
  • Searching
  • Weeping, sobbing, crying
  • Social withdrawal
  • Loss of appetite
  • Sleep disturbances
  • Energy loss, exhaustion
  • Somatic complaints
  • Physical complaints similar to deceased

Immunological and endocrine changes

  • Susceptibility to illness, disease, mortality

Table 2. DSM-5 diagnostic criteria for persistent complex grief disorder

Criterion A. The individual experienced the death of someone with whom he or she had a close relationship.

Criterion B.  Since the death, at least one of the following symptoms is experienced on more days than not and to a clinically significant degree and has persisted for at least 12 months after the death in the case of bereaved adults and 6 months for bereaved children:

  1. Persistent yearning/longing for the deceased.  In young children, yearning may be expressed in play and behavior, including behaviors that reflect being separated from, and also reuniting with, a caregiver or other attachment figure. 

  2. Intense sorrow and emotional pain in response to the death. 

  3. Preoccupation with the deceased. 

  4. Preoccupation with the circumstances of the death. In children, this preoccupation 
with the deceased may be expressed through the themes of play and behavior and may extend to preoccupation with possible death of others close to them. 


Criterion C.  Since the death, at least six of the following symptoms are experienced on more days than not and to a clinically significant degree, and have persisted for at least 12 months after the death in the case of bereaved adults and 6 months for bereaved children:

Reactive distress to the death

  1. Marked difficulty accepting the death. In children, this is dependent on the child’s capacity to comprehend the meaning and permanence of death. 

  2. Experiencing disbelief or emotional numbness over the loss. 

  3. Difficulty with positive reminiscing about the deceased. 

  4. Bitterness or anger related to the loss. 

  5. Maladaptive appraisals about oneself in relation to the deceased or the death (e.g., 
self-blame). 

  6. Excessive avoidance of reminders of the loss (e.g., avoidance of individuals, 
places, or situations associated with the deceased; in children, this may include avoidance of thoughts and feelings regarding the deceased). 


Social/identity disruption

  1. A desire to die in order to be with the deceased. 

  2. Difficulty trusting other individuals since the death. 

  3. Feeling alone or detached from other individuals since the death. 

  4. Feeling that life is meaningless or empty without the deceased, or the belief that one cannot function without the deceased.
  5. Confusion about one’s role in life, or a diminished sense of one’s identity (e.g. feeling that a part of oneself died with the deceased). 

  6. Difficulty or reluctance to pursue interests since the loss or to plan for the future (e.g., friendships, activities).

Criterion D.  The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.

Criterion E.  The bereavement reaction is out of proportion to or inconsistent with cultural, religious, or age-appropriate norms.

Table 3.  Risk and protective factors of complicated grief [1]

Risk Factors

Protective Factors

A.  Situation and circumstances of death.

1.  Stress of caregiving.

2.  Presence of concurrent stressors including financial strains, family conflicts.

1.  Death was not sudden or traumatic.

2.  No extreme symptomatic distress before death.

B.  Intrapersonal factors.

1.  Lack of protective personality factors like optimism, perceived control over daily activities, high self-esteem; secure attachment styles in relationships with others.

2.  Pre-bereavement depression?

3.  Widowers more vulnerable than widows.

-

C.  Interpersonal or non-personal resources and protective factors.

1.  Social isolation.

D.  Coping styles, strategies, processes.

1.  Rumination.

1.  Meaning-making.

Figure 1. Dual model of coping in bereavement [26]