Tools
Grief and Prolonged Grief Disorder
Introduction
Grief is a natural and universal response to the loss of a loved one. The grief experience is not a state but a process. Most individuals recover adequately within a year after the loss; however, some individuals experience an extension of the grieving process. This condition, identified as prolonged grief disorder, results from a failure to transition from acute to integrated grief.[1] Symptoms of acute grief include sadness, tearfulness, and possibly insomnia, and typically require no treatment. Prolonged grief disorder involves intense, painful emotions associated with a lack of adaptation to the loss of a loved one that persists for more than 1 year in adults and more than 6 months in adolescents or children. This condition is estimated to affect as many as 7% of bereaved individuals.[2][3]
The terms grief, mourning, and bereavement have slightly different meanings:
- Grief is a person's emotional response to loss. Loss can commonly include the death of a loved one. Alternatively it can be in the form of receiving a terminal diagnosis resulting in the anticipatory knowledge of impending loss of life.
- Mourning is an outward expression of that grief, including cultural and religious customs surrounding the death. Mourning is also the process of adapting to life after loss.
- Bereavement is a time period of grief and mourning after a loss.
- Anticipatory grief is a response to an expected loss that affects the person diagnosed with a terminal illness as well as their families.[4] Healthcare professionals can experience anticipatory grief as they work with patients approaching the end of life.
- Disenfranchised grief, as defined by Kenneth Doka (1989), is "grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported." Some examples could include grief related to the loss of a pet, perinatal losses, and loss of a body part. Healthcare professionals may experience disenfranchised grief in the workplace with patient deaths or complicated patient outcomes.
There have been many theories on grief processing. One of the most notable and historic theories was presented by Dr Elizabeth Kubler-Ross in her 1969 book, On Death and Dying. The book explored the experience of dying through interviews with terminally ill individuals and outlined the 5 stages of dying: denial, anger, bargaining, depression, and acceptance. This work is historically significant as it marked a cultural shift in the approach to conversations regarding death and dying. Before her work, the subject of death was somewhat taboo. Patients at the end of their life were not always given a voice or choices in their care plan. Some were not even explicitly told about their terminal diagnosis. Her work was popular in medical and lay cultures and shifted the nature of conversations around death and dying by emphasizing the experience of the dying patient.[5][6][7]
Kubler-Ross's 5 Stages of Dying
- Denial is a common defense mechanism used to protect oneself from the hardship of considering an upsetting reality. While persistent denial may be deleterious, a period of denial is quite normal and could be important for processing difficult information.
- Anger is commonly experienced and expressed by patients as they concede the reality of their loss. The anger may be directed at blaming cllinicians for inadequately preventing a terminal illness, family members for contributing to risks or not being sufficiently supportive, or spiritual providers or higher powers with a sense of injustice.[8]
- Bargaining typically manifests as patients seeking some measure of control over their illness or loss. The negotiation could be verbalized internally, as well as medical, social, or religious applications. Bargaining can appear rational, such as committing to treatment recommendations, or it could also represent more magical thinking, such as efforts to appease misattributed guilt they may feel is responsible for their diagnosis.
- Depression is perhaps the most immediately understandable of Kubler-Ross's stages, and patients experience it with symptoms such as sadness, fatigue, and anhedonia. Spending time in the first 3 stages is potentially an unconscious effort to protect oneself from this emotional pain.
- Acceptance describes recognizing the reality of a difficult diagnosis while no longer protesting or struggling against it. Patients may focus on enjoying the time they have left and reflecting on their memories. They may begin to prepare for death practically by planning their funeral or helping to provide financially or emotionally for their loved ones.
Understanding the stages has less to do with promoting a linear progression and more to do with anticipating patients' experiences to allow more empathy and support for whatever they go through.[6][7][[9]
Dual Process Model of Coping with Bereavement: Stroebe and Schut: Dual process 1999
In 1999, Margaret Stroebe and Henk Schut published the dual process model of coping with bereavement.[10] In this model, the bereaved intermittently confronts and avoids the stressors of grieving. The stressors are divided into 2 categories: those oriented towards restoration, for example trying new things, and adjusting to their changing reality, and those oriented towards their recent loss, such as the intrusion of grief into daily life, or breaking relational bonds as a result of the loss. Attending to work in both categories can be burdensome, so oscillating between them, as well as doing the work in tolerable increments, is important.
Neimeyer's Narrative and Constructivist Model
Robert Neimeyer views grieving as a process of meaning-making. He has published many works ranging from the 1990's through 2024. His theory acknowledges that people co-construct their understanding of reality through a narrative of their own life stories, influenced by their beliefs and world views. He describes "6 key realities influenced by death." In these 6 realities, he acknowledges that significant loss can validate or invalidate a person's framework and beliefs in life; this may require developing a new framework to heal and incorporate the loss into their worldview. Grief is simultaneously universal and unique, so the therapy for the bereaved must be tailored to each client's individual needs. The process of grieving is inherently an active rather than passive process, filled with decision-making and reconstruction both practically and existentially.
Emotions during the grieving period are useful and can serve as guides in reconstructing a sense of balance and meaning in life after the disruption caused by significant loss. Reconstructing an identity after a significant loss is an inherently social process, as the new identity is partly defined in relation to their community and social norms. Finally, adapting to loss involves finding a way to incorporate the loss into a new identity and self-narrative, giving the loss a sense of meaning and making sense of the changes. This can enable not only survival after a loss but eventually thriving.[11][12] Therapists using the narrative and constructivist model may have patients re-tell the story of their loss with visual aids, exploring the thoughts and feelings accompanying it. They may also suggest writing goodbye to the deceased or exploring their feelings through metaphors.
Prolonged Grief Disorder
Most people can adequately process their grief within a year for adults or 6 months for children or adolescents. This does not mean that they have forgotten their loved one or are not still impacted by their loss, however, they are functional and are no longer severely affected by the distress of intense grief to a degree that limits their daily activities on a regular basis. They have been able to move forward in their lives and incorporate their loss into their new reality. However, there are some people who develop what is called prolonged grief disorder and continue to have severe symptoms of grief for a prolonged period of time.
Etiology
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Etiology
There are identifiable risk factors that can increase a person's likelihood of developing prolonged grief disorder. Traumatic circumstances such as the death of a spouse or a child, the death of a parent in early childhood or adolescence, sudden, unexpected, and untimely deaths (particularly if associated with horrific circumstances), multiple deaths (particularly disasters), and deaths by murder or manslaughter can prolong grief. Vulnerable people such as those with low self-esteem, low trust in others, previous psychiatric disorders, previous suicidal threats or attempts, young age of the deceased, lower perceived social supports, an ambivalent attachment to the deceased person, dependent or interdependent attachment to the deceased person, and insecure attachment to parents in childhood (mainly learned fear or learned helplessness) can also increase risk for prolonged grief.[13][14]
Epidemiology
Results from studies evaluating sex differences in prolonged grief show mixed results, with some showing little difference.[15] Other study results showed that men tended to exude higher levels of acute distress that decreased over time, while women tended to have increasing symptoms over time.[16] Other results have reported female sex and low social support as risk factors for prolonged grief.[17] There are likely significant personal and cultural variances affecting these outcomes.
Grief can manifest differently in patients of varying ages. Children and adolescents will grieve differently according to their developmental stages. Identifying prolonged grief in children can be challenging, depending on the child's ability to communicate their emotions and needs. Increased grief and distress can be anticipated if the loss was of a primary attachment or caregiver. Grieving children may display delays in meeting developmental milestones or anger and frustration at their needs not being met. Children rely heavily on adults and social support to help them cope and navigate the grieving process. Some specific types of distress seen in children after loss include separation distress and existential or identity distress.
If the death occurred in a traumatic fashion, it may bring up recurrent images of the trauma or complicated emotions ranging from self-blame to fear or desires for vengeance. Well-intentioned adults may limit the information given to children about death to protect them. However, they could also limit their ability to process death due to a lack of clarity of information.[18] A child's ability to conceptualize loss and death is influenced by their developmental stage, for example, an ability to comprehend abstract concepts. Seeking the consultation of a professional trained in developmental stages and their influence on the grieving process to support a child's grieving process is advised.
Pathophysiology
Physiologic stress resulting from intense grief can have a wide range of consequences. Increased cardiovascular and cerebrovascular events have been associated with intense grief, in some cases leading to myocardial infarctions or cardiomyopathy. Takotsubo cardiomyopathy, also called broken heart syndrome or stress cardiomyopathy, is another cardiovascular syndrome triggered by intense grief. This condition is a weakening of the left ventricle leading to apical ballooning caused by severe emotional or physical stress, such as losing a loved one, sudden illness, a severe accident, or a natural disaster (eg, earthquake). Takotsubo cardiomyopathy occurs in women 90% of the time, most commonly in postmenopausal women, and often resolves within a month.[19]
Various mechanisms have been theorized to explain the association between intense grief and physiologic pathology. Emotional triggers are linked to increases in stress hormones, catecholamine release, and increased sympathetic nervous system stimulation. This stress can result in hemodynamic changes, including the following:
- Vasoconstriction
- Increased blood pressure
- Increased heart rate
- Arrhythmias
- Increased platelet activity and aggregation
- Release of proinflammatory cytokines
- Increased release of endothelin
- Production of fibrinogen (which promotes plaque destabilization and a prothrombotic state)[20]
Prolonged grief can also give rise to more subtle physiological consequences, potentially stemming from anhedonia or social isolation. People may be less prone to address their healthcare needs, decrease their nutritional intake, exercise, and sleep, and become socially isolated—all of which have negative mental and physical health consequences.
History and Physical
Creating a safe space for patients to discuss their grief is essential during an evaluation, as they may be reluctant to bring it up and may need an invitation or direct question to begin talking about their grief. Patients may also not be fully aware of how their grief is manifesting and may not be aware that it could lead to many common physical complaints.
Common grief reactions: Reactions to loss are called grief reactions and vary from person to person and within the same person over time. Grief reactions lead to complex somatic and psychological symptoms.
Feelings: The person who experiences a loss may have a range of feelings, including shock, numbness, sadness, denial, anger, guilt, helplessness, depression, and yearning. A person may cry for no reason.
Thoughts: Grief can cause a sense of disbelief, confusion, difficulty concentrating, preoccupation, and hallucinations.
Physical sensations: Grief can cause physical sensations like tightness and heaviness in the chest or throat, nausea or stomach upset, dizziness, headaches, numbness, muscle weakness, gastrointestinal upset, tension, or fatigue.
Behaviors: These include difficulty sleeping, loss of interest in daily activities, and becoming more aggressive or irritable may be expected in those experiencing grief.
Somatic symptoms: The symptoms include chest tightness and choking, shortness of breath, abdominal distress, decreased muscle power, and lethargy.
Psychological symptoms: Guilt, anger, hostility, restlessness, inability to concentrate, lack of capacity to initiate and maintain an organized pattern of activities are the most common psychological symptoms.
Takosubo cardiomyopathy: Chest pain and shortness of breath after severe stress (emotional or physical), electrocardiogram changes that mimic heart attack with no coronary artery occlusion, movement abnormalities of the left ventricle, and ballooning of the left ventricle are some symptoms of this condition.
Evaluation
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Ed, DSM-5, defines prolonged grief disorder with the following criteria:
- The death of someone close to a person occurring at least 1 year prior for adults or 6 months prior for children and adolescents.
- The person continues to experience intense yearning or a preoccupation with the deceased, with thoughts or memories of the deceased person occurring most days.
- At least 3 of the following for at least 1 month that leads to distress or disability:
- Identity disruption
- Disbelief about the death
- Avoidance of reminders of the fact that the person is deceased
- Intense emotional pain
- Difficulty reintegrating into relationships and activities
- Inability to experience a positive mood or emotional numbness
- Loneliness
- A sense that life is meaningless
The disturbance causes impairment in social, educational, occupational, or other essential aspects of daily function, and the symptoms exceed the cultural or religious norms for the patient and are not better attributed to another psychological diagnosis or substance use.[21] Further, screening questionnaires such as the Brief Grief Questionnaire and the Inventory of Complicated Grief can reliably identify complicated grief.[22][23] There are some screening tools designed to predict complicated grief in the spouses of cancer patients. These 2 scales, the Family Adaptability and Cohesion Evaluation Scale and the Brief Symptom Inventory, assess family functioning, psychological functioning, and grief reaction.
The grief evaluation measure (GEM) can also assist in identifying the development of complicated grief symptoms in a mourning adult. This evaluation assesses qualitative and quantitative risk factors, including the mourner's loss and medical history, financial resources before and after the loss, and circumstances surrounding the death. The GEM also provides in-depth information on bereaved individuals' subjective grief symptoms and associated experiences.[24]
Treatment / Management
Normal Grief
Most bereaved persons adapt over 6 months to 1 year. Learning to adapt to the loss and reintegrating into their social networks and daily activities is a crucial goal of processing normal grief. Adequate social support is often important. A therapist may use many techniques to help a person who is acutely grieving to process their grief and hopefully prevent development of prolonged grief disorder. There are multiple theories of grief processing and often a therapist will use a combination of techniques and knowledge to treat an individual patient. Each person's grief process is unique to them, the circumstances of their loss, and their cultural influences. The interdisciplinary team is particularly helpful in managing grief and can get early treatment to those at risk for developing prolonged grief disorder before the 6 or 12 month period has passed.
Prolonged Grief Disorder
This condition is managed best with prolonged or complicated grief therapy, which incorporates elements of cognitive behavioral therapy and other techniques aimed at promoting adaptation to the loss, including acceptance of the loss and restoring a sense of meaning and satisfaction in life without the deceased loved one.[25][26][27] Patients experiencing prolonged grief may also benefit from pharmacological treatment of bereavement-related anxiety or depression. The age of the patient may influence therapeutic techniques used. There is evidence that cognitive behavioral therapy can be more effective in the treatment of children than some other techniques.[28](A1)
Takosubo Cardiomyopathy
Patients with Takosubo cardiomyopathy require inpatient cardiology evaluation. They are initially evaluated and treated similarly to person diagnosed with a myocardial infarction. Treatment options are often supportive, and symptoms often resolve along with the resolution of the inciting physical and emotional stress. However, sometimes severe symptoms of shock or heart failure develop that need more intensive interventions. Assessing the bereaved for ongoing unmet needs following the loss of their loved ones, including practical requirements like the ability to manage activities of daily living, is also essential. For example, it is possible that the deceased loved one was in charge of managing the finances, driving, or cooking for other family members or spouses, and the bereaved may not have the ability or skills to maintain these activities without assistance.
Differential Diagnosis
Differentiate prolonged grief from major depressive disorder (MDD) and posttraumatic stress disorder (PTSD). Prolonged grief disorder has a classic symptom presentation of yearning and sorrow, along with the preoccupied thoughts of the deceased and the inability to accept the reality of death, help in differentiating this condition from MDD and PTSD.[25]
Prognosis
The course depends on how patients adapt to their new reality. This is contingent upon their personal resiliency, support system, and psychiatric assistance.
Complications
Physical Complications
- Impairment of the immune response system
- Increased adrenocortical activity
- Increased mortality from heart disease (especially in older, widowed patients)
Psychiatric Nonspecific Disorders
- Depression (with or without suicidal risk)
- Anxiety
- Panic disorders
- Other psychiatric disorders
- PTSD
Deterrence and Patient Education
Deterrence and Patient Education
Considering the following before disclosing unfavorable news is essential:
- Assess whom it is appropriate to disclose the information to. Ask the patient what type of information they want to hear, and what type of information can be shared with family members. Some cultures and families protect patients from distressing news and would prefer a family member be told instead of the patient, assuming the patient has expressed this wish themselves. Incorporating this type of questioning into routine evaluations well ahead of a moment of crisis whenever possible is advised.
- Have social support and a place to meet that is appropriate for the patient's values and desires (setting).
- Establish a relationship of mutual trust and respect.
- Provide information at a speed and language that is easily understood.
- Discover what facts are already known by the patient and family.
- Encourage questions and monitor what is understood, as it takes time to hear and understand the negative news.
- Give verbal and nonverbal assurance regarding the normality of their reactions.
- Give some time to the patient and family to react emotionally.
- Be clear and concise. Confusion can develop when news is shared vaguely in an attempt to soften the distress of the recipient.
- Stay with the patient and the family until they are ready to leave and offer further opportunities for clarification, information, or support.[29][30]
Preparedness for End-of-Life Care
Mentally preparing the loved ones of terminally ill individuals is essential. Preparedness for death and coping with bereavement play a crucial role in prolonged grief and its prevention.[31]
Enhancing Healthcare Team Outcomes
The effective management of grief reactions and prolonged grief disorder requires a comprehensive approach that involves various healthcare professionals to enhance patient-centered care, outcomes, patient safety, and team performance. The interprofessional team can include a mental health nurse, palliative care team, psychiatrist, primary care clinician, social worker, chaplain, and other support professionals. Even temporary grieving can affect patients physically and mentally, and it is best to have mental health professionals involved in their care early on. For most patients, time will help heal the grieving process, but some patients may benefit from counseling or the temporary use of pharmacotherapy.
Healthcare professionals must develop empathy and communication skills to engage with grieving individuals effectively. This involves active listening, empathy, and recognizing and responding to emotional cues. Additionally, professionals should be adept at assessing mental health and identifying signs of prolonged grief disorder. Developing a comprehensive strategy for grief management involves a multidisciplinary approach. This strategy should include a combination of psychotherapy, pharmacotherapy, and support groups. Tailoring the treatment strategy to the individual's needs is crucial, considering factors such as cultural background, religious beliefs, age, and personal preferences. Ethical considerations play a significant role in providing care to grieving individuals. Healthcare professionals must respect the autonomy and dignity of patients while ensuring confidentiality. Ethical decision-making becomes particularly important when addressing issues such as end-of-life care and respecting the deceased's wishes.
Each healthcare professional involved in grief management has specific responsibilities. Advanced clinicians may lead the diagnostic and treatment aspects, while nurses are crucial in providing emotional support and monitoring patients' well-being. Pharmacists ensure appropriate medication management, and all professionals are responsible for educating patients and their families about the grieving process. Effective communication among healthcare professionals is essential for a cohesive and integrated approach to grief management.
Regular case conferences, team meetings, and shared electronic health records contribute to a holistic understanding of the patient's condition. Clear communication helps develop a unified care plan and promptly address any emerging concerns. Coordinating care involves synchronizing efforts among healthcare professionals to ensure a seamless and integrated patient experience. This includes coordinating appointments, sharing relevant information, and facilitating transitions between different levels of care.
A well-coordinated approach enhances the efficiency of interventions and improves overall patient outcomes. In conclusion, a collaborative and well-coordinated effort among healthcare professionals is crucial for addressing grief reactions and prolonged grief disorder effectively. By combining their skills, adhering to ethical principles, and maintaining open communication, healthcare teams can provide patient-centered care that promotes positive outcomes, patient safety, and optimal team performance in the context of grief management.
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