Tuesday, October 30, 2018

Pain Before It Happens - Anticipatory Grief

(Taken from my Psychology of Grief research project)

Working through an impeding loss, or imminent death, gave rise to the term anticipatory grief by Lindemann in the 1950’s (Worden, 2009). Since then others have researched this topic with mixed results.  In fact, anticipatory grief is still controversial in both what it looks like and if it exists at all (Nielsen, Neergaard, Jensen, Bro, & Guldin, 2016) (“Grief, Bereavement, and Coping with Loss.” n.d.).  There are those who feel it is not possible to grieve until there is a loss (Reynolds, Botha, 2006). However since cognitive therapists believe emotions are often triggered by thoughts, how we think is ultimately our reality. In any case, there is stress associated with anticipating a death whatever the label it is given. With that preamble, the definition of anticipatory grief in this paper is: When an individual is anticipating an impeding loss, or death, and develops symptoms relating to that expected event.

Not everyone who knows someone who is going to die, will develop symptoms or go through anticipatory grief (“Grief, Bereavement, and Coping with Loss.” n.d.).  Anticipatory grief commonly affects those dealing with loved one who have terminal illnesses such as cancer and even long term illnesses such as Alzheimer's (Scott, 2009). Some believe it can also affect the person who is actually dying (Shore, Gelber, Wientzen, Koch, & Sower, n.d.). Symptoms range from physical one such as headaches, nausea, fatigue, sleep and appetite disturbances, to emotional ones like anxious, sad, helpless, disorganized, forgetful, angry or feeling discontented from others (Shore, Gelber, Wientzen, Koch, & Sower, n.d.). 

Due to the controversy surrounding anticipatory grief and the limited research on it, there are three schools of thought:
1.     It doesn’t exist, it’s a form of stress. (Nielsen, Neergaard, Jensen, Bro, & Guldin, 2016)
2.     It is pre-grieving or grieving started early (Worden, 2009)
3.     It is a separate event and has its own tasks or phases (“Grief, Bereavement, and Coping with Loss.” n.d.).
The University of Rochester (Anticipatory Grief, n.d.) lists the phases of anticipatory grief as:
1.     The person accepts that death is inevitable and there is no expectation of a cure. Feelings of sadness, anger, and depression can accompany this phase (Hogan, 2009).  This corresponds to Task 1 and starts into Task 2 of Worden’s model.
2.     Concern for the dying person.
3.     Death is “rehearsed” and preparations made.
4.     Person imagines what life will be like without the person.

While one might think knowing someone will die will enable them to process unfinished business, research shows mixed reactions.  Some grieve even harder after their loss, while others feel more closure (Worden, 2009) (Reynolds, Botha, 2006).  Variables are many, including some grow much closer to the person dying than in their previous relationship and thus the loss has an even greater impact, while others find they have dealt well with the unfinished business and are able to go through the uncomplicated grief tasks more effectively (Worden, 2009) (Reynolds, Botha, 2006).  

An additional note about complications.  Those whose loved ones have Alzheimer’s. One person shared she felt she was experiencing a new loss each time her husband forgot something else.  Unlike a terminal illness, a person with Alzheimer’s loses who they are bit by bit (Scott, 2009) (“Feeling Grief and Loss While You're a Caregiver” n.d.). 

Assessment for anticipatory grief is similar to grief in general except there is no death event that triggers it.  Instead symptoms may arise after a diagnosis or any time after.  An increase in anxiety is a common attribute of those suffering from anticipatory grief (Worden, 2009).  Questions, such as the following, can be used to assess a client (Use a scale to rate each one.) These have been modified from the grief assessment by Holly G. Prigerson, Ph.D., Paul K. Maciejewski, Ph.D.:
            Since the diagnosis of ________ how often have you felt yourself questioning the prognosis?
            Since the diagnosis how distressing has the though been you will lose _______ ?
            Has this thought been disruptive to your daily routine? How often?
In the past month, to what extent have you felt on edge, jumpy, or easily startled?
In the past month, to what extent do you feel that life will be empty or meaningless without _____?
            Do you find yourself wondering what life will be like after _______ is gone?

Answers to these questions can help provide insight as to further testing for depression and anxiety, and of course use the standard rating scales (At each session, in addition to suicide ideation exploration. These questions also help determine how the client is processing the tasks of grief, such as Task 1, do they accept this event.  As such anticipatory grief lends itself to really working on Task 1 and 2 of grief (Worden, 2009).  Some of the treatment suggestions recommended include:
·       Normalize the clients emotions. What they are feeling is common, ok, and real (Scott, 2009) (Hogan, 2009).
·       Help client find resources as needed. Hospice care, support network, etc. (Scott, 2009).
·       Teach the client to deal with the extra stress and strain. CBT, relaxation techniques, stress management, etc. (Scott, 2009).
·       Work through any depression or anxiety symptoms. (Hogan, 2009)
·       Start working through the tasks of grief (Worden, 2009)

While experts disagree on whether or not anticipatory grief exists and if it exists what it really is, individuals do experience real emotions and stress when faced with an impeding loss of a loved one.  These specific symptoms can be dealt with using various psychotherapy tools and techniques regardless of the label attached. 


Feeling Grief and Loss While You’re a Caregiver. (n.d.). Retrieved from https://www.webmd.com/palliative-care/caregiver-grief-and-bereavement#1

Hogan, Marty, L. M. (2009). Anticipatory Grief. Ashland: Sacred Vigil Press.

Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Bro, F., & Guldin, M. B. (2016, March). Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/26796738

Reynolds, L., Botha, D. (2006), Anticipatory grief: Its nature, impact, and reasons for contradictory findings, Counselling, Psychotherapy, and Health, 2(2), 15-26, July 2006.

Scott, P. S. (2009, August 07). Anticipatory Grief: How to Cope With the “Living Death” of Alzheimer’s. Retrieved from https://www.caring.com/articles/anticipatory-grief-alzheimers

Shore, Julia Carl, FNP-BC, ACHPN, Gelber, Marianne Wientzen, GNP-BC, ACHPN, Koch, Lauren M., ANP-BC, ACHPN, Sower, Emily, ANP-C, ACHPN. (n.d.). Anticipatory Grief: An Evidence-Based Approach : Journal of Hospice & Palliative Nursing. Retrieved from https://journals.lww.com/jhpn/Abstract/2016/02000/Anticipatory_Grief__An_Evidence_Based_Approach.5.aspx

Worden, J. W. (2009). Grief counseling and grief therapy: A handbook for the mental health practitioner. Springer Publishing.

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