Treating Chronic Pain Patients Through a Grief Perspective
by Tracey Chester, L.M.F.T.
The American Academy of Pain Management estimates that approximately 100 million Americans are living with pain today. That number astonishingly exceeds the number of people suffering from diabetes, heart disease, and cancer, combined. Pain-management specialists are becoming increasingly aware that chronic pain is associated with depression and other mood disorders (in fact, 77% of pain patients report feeling depressed). This has resulted in more psychotherapy referrals of patients with co-morbid chronic pain and mood disorders.
Cognitive Behavior Therapy (CBT) is currently considered to be the standard of care for psychotherapy approaches to pain management; however, Acceptance and Commitment Therapy (ACT) has been receiving more attention as its effectiveness has been consistently demonstrated in clinical trials. In my own practice, I use both CBT and ACT with patients suffering from chronic pain, with varying degrees of success. Indeed, many of my patients have completed a 12-week CBT or ACT pain management group program prior to beginning individual therapy. Both modalities teach useful tools, but in my clinical experience, I have found that a successful outcome is limited unless the patient has been allowed to grieve the loss of his or her pre-pain functioning.
How can one change in a 12-week group program into a person who is able to adapt to the new experience of being unable to function in various aspects of life due to their pain? Compounded by the invisibility of their pain (many patients present visibly as healthy), they are often led by these treatments to believe they are suffering because of their negative thoughts. Indeed, recent research suggests that the efficacy of CBT is limited to improvement in mood immediately following treatment, but not in long-term pain and functional status. I propose that regardless of treatment modality, allowing the patient to grieve for the loss of their pre-pain self is essential for the ultimate success of that treatment. Guiding a patient through this grief is especially important when he or she understands for the first time that the acute pain they have been experiencing is now their new reality; it is now considered chronic pain. They have exhausted all means for a “cure,” i.,e., they have failed multiple medication trials, undergone surgery, and have tried complimentary medicine without success. They have now entered a new stage in their treatment process: pain management. Acceptance of this stage requires giving up hope of a pain-free existence, and can be accompanied feelings of despair, hopelessness, anxiety, and/or anger. It is at this stage that they are referred to or seek help from mental health professionals.
Working with pain patients is personal to me; I am a chronic pain patient myself. My personal and professional experiences with pain management, along with my background as a grief counselor for the erstwhile San Diego Hospice and Elizabeth Hospice for five years have given me a unique perspective on pain. I have noted the striking similarities between losing a loved one and losing one’s health to chronic pain. For example, the majority of people are shocked by the death of a loved one even when the latter has been ill for a long time; similarly, a person who has lived with pain for many years reacts with shock when he or she realizes that the pain will never completely go away. Viewing chronic pain it in this light can offer insight into what patients are experiencing. Furthermore, the invisibility and misunderstanding of their condition by friends, families and co-workers can greatly compound the feelings of grief.
The view of grieving put forth by J. Worden (Worden, 1991; 2011) is widely accepted by experts in grief counseling as the most comprehensive description of the grieving process, often referred to as Worden’s Tasks of Mourning. The process includes (1) an acceptance of the reality of the loss, (2) experiencing the pain of grief, (3) adjusting to the environment with the deceased missing, and (4) withdrawing emotional energy and reinvesting it in other relationships. The most widely cited model of “the stages of mourning” is that proposed by Elizabeth Kubler-Ross, wherein a person sequentially experiences denial, anger, bargaining, depression, and acceptance, in that order. Kubler-Ross’s model seems to more accurately describe the experience of patients with terminal illness rather than mourning. An important distinction in Worden’s tasks of mourning and the Kubler-Ross model is that the former focuses on simultaneous processes while the latter describes sequential processes. Both models can be useful in guiding a pain patient process his or her emotions regarding chronic pain.
My proposed approach also takes into account Maslow’s Hierarchy of Needs (Maslow, 1971; starting with basic physiological needs, followed by the need for safety, love/belonging, esteem, and self-actualization). It helps to understand many of the hurdles chronic pain patients have to overcome. How do they become their best selves? Most people struggle with this, without the basic health of body being compromised. For example, chronic pain can lead to loss of employment; this complicates the grieving process significantly, making it difficult to move forward and adapt to the new reality. Patients may suddenly find themselves struggling with safety (security of body, of employment, of resources, of the family, of health, of property). When safety comes up over and over through treatment, it can sabotage movement in other areas of life; love/belonging, esteem, and finally self-actualization.
Adapting the tasks of grieving to the experience of chronic pain:
My own approach to pain management combines aspects of Worden’s Tasks of Mourning, a version of Kubler-Ross’s model adapted to the grief of chronic pain (Martin, J., 2015), and “Maslow’s Hierarchy of Needs. I have found that presenting these “stages” to patients helps normalize their experience and works as a guide for treatment. I present the following summary to my patients:
- Accepting the reality of the loss: What is acceptance of chronic pain? Acceptance can be defined as a way of addressing an unchangeable situation or a life experience. It is not the same as defeat, helplessness, quitting, or resigning to a life of unhappiness, struggle, or misery. Accepting that you have pain (or that your pain is true and believable) is different than giving up all hope. Denying that your pain is not chronic may delay the grieving process, and in turn, delay adapting to this new life experience.
- Experiencing the pain of the loss: Anger is a necessary stage in the healing process. Feelings of anger may seem endless, but they will begin to subside and make way for healing. Your anger may extend to your doctors, family, friends and loved ones. Thoughts such as, “This isn’t fair! I didn’t do anything to deserve this!” or “Just give me something that will make me feel better!” are common. Similarly, feelings of emptiness and grief are profound and seemingly endless; while sadness is a normal response to a life-altering situation, with chronic pain patients, it commonly turns into clinical depression. There is research indicating that depression that was pre-existing before the occurrence of a stressful event, or brought on by the onset of the event yields similar functional changes to the human brain. Furthermore, functional neuroimaging studies have demonstrated that brain regions implicated in chronic pain are the same as the ones implicated in depression. As with depression, anxiety about the future in terms of financial security, medical bills, social expectation, etc. can be common. Professional help in the form of individual or group therapy, or even a peer-led support group can be a helpful way to cope with these feelings.
- Adjusting to a life with chronic pain: Having a chronic condition is almost always accompanied by loss. Learning coping skills to manage the pain can help rebuild self-esteem and relationships. ACT can help with finding a way to live a fuller life despite the pain. CBT can help with restructuring negative thoughts to adaptive thoughts, .e.g., it can help eliminate thoughts that begin with “never,” “should,” or “always”. This stage corresponds with Maslow’s Esteem and Love/Belonging.
- Moving Forward: The final stage of adapting to a new life consists of reevaluating short and long term goals and what that means for the future. This involves setting daily goals that are realistic and redefining career and relationship goals so they are sustainable. For example, having a profession that is physically demanding will need to be replaced by one that is less so, and accommodates one’s pain. Similarly, relationship roles and functions may need to be redefined, i.e., being a husband/wife/daughter/mother may look different than before the onset of the pain. Thus, defining what one can do versus cannot do can go a long way toward helping patients with chronic pain see the pain as only one aspect of a life that has meaning and purpose. This stage, thus, corresponds to Maslow’s hierarchy of Self-Actualization. Self-Actualization is not easily attainable by anybody, but is especially by those with issues of safety/security. Chronic pain sufferers often have health issues, and can also have uncertain job or financial security. Refocusing one’s energy from the losses to what is still possible can help them move toward a fuller life.
American Academy of Pain Management (www.aapainmanage.org); 209-533-9744
American Chronic Pain Association (www.theacpa.org); 800-533-3231
Bair MJ, et al. “Depression and Pain Comorbidity: A Literature Review,” Archives of Internal Medicine ( Nov. 10, 2003): Vol. 163, No. 20, pp. 2433–45.
Badenoch, Bonne: Being a Brain-Wise Therapist; A Practical Guide to Interpersonal Neurobiology, New York: W.W. Norton & Company, (2008)
*Ehde, Dawn M., Dillworth, T.M & Turner, Judith A. Cognitive Behavioral Therapy for Individuals With Chronic Pain. American Psychologist, Vol 69, No. 2, pp153-166, 2014.
Harvard Mental Health Letter, Hurting bodies and suffering minds often require the same treatment. September 2004 http://www.health.harvard.edu/mind-and-mood/depression_and_pain
Hughes LS, Clark J, Coclough, JA, Dale, E McMillan D Acceptance and Commitmant Therapy (ACT) for Chronic Pain: A systematic Review and Meta-analyses. The Clinical Journal of Pain [Clin J Pain] 2016 Jul 29. Date of Electronic Publication: 2016 Jul 29.
Kübler-Ross E. On Death and Dying (Rout- ledge, 1969).
Martin, Jennifer, PsyD; http://www.painnewsnetwork.org/stories/2015/9/13/the-7-psychological-stages-of-chronic-pain-illness
Maslow, A. H. The Farther Reaches of Human Nature. New York: Esalen Books. Viking Press (1971)
Ohayon MM, et al. “Using Chronic Pain to Predict Depressive Morbidity in the General Population,” Archives of General Psychiatry (Jan. 2003): Vol. 60, No. 1, pp. 39–47.
Worden J. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner (Springer Publishing Company, 1991)
Worden, J. William; Winokuer, Howard R.; A task-based approach for counseling the bereaved. In: Grief and bereavement in contemporary society: Bridging research and practice. Neimeyer, Robert A. (Ed); Harris, Darcy L. (Ed); Winokuer, Howard R. (Ed); Thornton, Gordon F. (Ed); Publisher: Routledge/Taylor & Francis Group; 2011, pp. 57-67. [Chapter], Database: PsycINFO
Tracey Chester is a Licensed Marriage and Family Therapist (LMFT 93387) who specializes in chronic pain, mood disorders and grief. Tracey is also a chronic pain patient herself, so she knows what it is like to lead a fulfilling life despite having pain. Tracey uses non-judgmental interpersonal therapy, attachment theory, evolutionary psychology, and cognitive tools to treat her patients. Tracey strongly believes in and employs collaboration with medical providers of pain patients to enhance their treatment. She also believes support is vital for family members of chronic pain patients and integrates her training in Marriage and Family theoretical models to address family interactions and cultural influences on chronic pain treatment.
Print a copy of the article here.