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Deborah (Debi) A. Boyle MSN, RN, AOCNS, FAAN, is editor in chief of Oncology Nursing News®. She is a long tenured oncology clinical nurse specialist who has practiced in both Comprehensive Cancer Centers and community cancer programs. A frequent speaker nationally and abroad, Debi is the recipient of numerous honors and has published more than 330 articles, chapters, monographs, editorials, blogs, and books. A writer, editor, and speaker, Debi is dedicated to advancing quality nursing education and practice within cancer care.

A Complicated Grief

While complicated grief is not new, awareness of it is.
PUBLISHED: 4:35 PM, TUE FEBRUARY 12, 2019
Marianne is a 45-year-old widowed mother who was the primary caregiver of her 20-year-old daughter who died of acute myelocytic leukemia in the ICU last year. Her two remaining children are worried about how their mother is coping with the death of their youngest sister. When you ask them to explain the nature of their concerns, they describe the following. After taking a leave of absence from her teaching job to care for her daughter, Marianne did not return to work. She consistently finds excuses not to participate in family events that previously she enjoyed immensely. Her children also state that their mother is not her usual fastidious self in her appearance and has lost a considerable amount of weight. Also of note, she continues to go to the cemetery 3 to 4 times a week to the graves of her daughter and late husband, who died 5 years ago.

This is the face of complicated grief. While this phenomenon is not new, awareness of it is. Most recently, evidence was provided to endorse its addition in the Diagnostic and Statistical Manual (DSM-5) revision.1 If it was accepted as an official diagnosis, treatment for complicated grief would be covered by insurance companies.2 Unfortunately, this did not transpire, and as a result, lack of coverage serves as a barrier to obtain services for this disorder.

Complicated grief (CG) was first identified in the literature more than 20 years ago.3 It is a variant of normal bereavement that is prolonged and complex and interferes with numerous aspects of life. It is often is accompanied by negative thoughts and behaviors, and requires intervention.4 An estimated 20% of people who are receiving mental health treatment have unrecognized CG, with risk factors including a prior history of anxiety disorders and experiencing the sudden, unexpected or violent loss of a loved one – particularly someone who is young.5

Research findings have characterized CG as occurring more than six months after the death of a loved one with the following potential indicators:
  • Ongoing yearning for the deceased such as feeling intense emptiness and loneliness
  • Frequent preoccupation with the deceased
  • Recurrent thoughts that life is meaningless or unfair without the deceased
  • Lack of return to pre-death norms often resulting in withdrawal and isolation
  • Inability to find pleasure in activities frequently enjoyed
  • Feeling shock, stunned, or numbing since the loved one’s death
  • Feelings of disbelief or inability to accept the loss
  • Self-neglect
  • Rumination about the circumstances or consequences of the death
  • Anger or bitterness about the death
  • Trouble trusting or caring about others
  • Intense reactions to memories or reminders of the deceased resulting in behaviors either avoiding or pursuing closeness
  • Suicidal thoughts. 4, 6,7

CG is as an exaggerated response of usual grief that endures over time and is characterized by negative consequences. Zisook and colleagues described this as the inability to transition from acute grief to integrated grief. 8
Mason and Tofthagen4 identified numerous risk factors for CG. They include the following:
  • Caregiver variables:
    • Younger age;
    • Fewer years of education;
    • Lower income;
    • Parent role to the deceased;
    • History of mental illness (i.e., anxiety, depression), drug or alcohol use;
    • Unresolved loss;
    • Exposure to stressful life events.
  • Deceased variables:
    • Age (i.e., child or younger age);
    • Heightened fear of death;
    • Death occurs in the hospital setting;
    • Suicide as cause of death. 4

The outcomes of CG are rarely positive, and the condition can lead to a heightened risk for suicide.9 Other negative corollaries include development of or worsening co-morbidities, increased risk for alcohol dependence, and hospitalization rate.
Marianne’s children were correct to voice concern about their mother’s CG symptoms. She exhibited numerous manifestations, even a year after her daughter’s death such as her inability to return to teaching, her avoidance of pleasurable activities, evidence of self-neglect, and her prolonged preoccupation with her daughter’s death as demonstrated by her frequent cemetery visits. This case also was depicted prominent risk factors, including the young adult age of Marianne’s daughter and her death in the critical care setting. Marianne was also the deceased’s mother and suffered a significant previous loss in the not-too-distant past.

As oncology nurses, our close proximity to patients and families facilitates our astute recognition of “red flags.” Our intense and protracted exposure to Marianne and her daughter in both the ambulatory and in-patient settings fostered an awareness of numerous CG risk factors. Marianne was a fairly recent widow as well as mother and primary caregiver to her unmarried young adult daughter. Other red flags to consider could be evidence of Marianne’s “vigil visitor” coping style, never leaving the hospital or accepting help from her children. Dismissal of offers of support from the social worker might be another warning sign of risk.

Awareness of the prevalence and manifestations of complicated grief needs to be part of oncology nurses’ repertoire to enhance early referral to available psychosocial resources as we embrace the reality that cancer is truly a family disease.

References:
1 American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders: DSM-5, 5th ed. American Psychiatric Association: Washington D.C.
Shear MK, Simon N, Wall M et.al. (2011). Complicated grief and related bereavement issues for DSM-5. Depress Anxiety, 28(2): 103-117.
3 Prigerson HG, Frank E, Kasl SV et.al. (1995). Complicated grief and bereavement-    related depression as distinct disorders: Preliminary empirical validation in elderlybereaved spouses. Am J Psychiatry, 152(1): 22-30.
Mason TM & Tofthagen CS (2018). Complicated grief of immediate family caregivers: A concept analysis. Adv Nurs Science; 1-11.
5 The Center for Complicated Grief (2018). Official Diagnostic Criteria. The Center for Complicated Grief: New York, NY.
Zisook S, Simon NM, Reynolds CF et.al. (2010). Bereavement, complicated grief, and DSM. Part 2: Complicated grief. J Clin Psychiatry, 71(8): 1097-1098.
7 Tofthagen CS, Kip K, Witt A, McMillan SC (2017). Complicated grief: Risk factors, interventions, and resources for oncology nurses. Clin J Oncol Nurs, 21(3): 331-337.
8 Zisook S, Iglewicz A, Avanzino J et.al. (2014). Bereavement: Course, consequences, and care. Curr Psychiatry Rep, 16(10): 482.
Stroebe M, Schut H, Stroebe W. (2007). Health outcomes of bereavement. Lancet, 370(9603): 1960-1973.



 

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