How clinicians can help patients work through feelings of loss when faced with a chronic pain diagnosis.

Pages 19-21

All human beings have three common experiences: life, death, and grief. However, despite grief being a universal experience, the literature dealing with this topic is conspicuously scarce.1 Loss related to grief is not just caused by death, but may also be caused by a major trauma and even chronic pain.2,3 The fear of being incapacitated due to pain for some may be similar to the fear of death.4 In fact, when a person suffers the loss of a loved one, it may often feel like losing a part of oneself.5 In addition, past literature has described reactions to loss due to death as being similar to other forms of loss, including chronic pain and illness.6-7

Patients with chronic pain experience considerable losses as a result of the multiple impacts it has on their lives.8-10 Research has found that patients suffering from chronic pain experience an inability to engage in meaningful activities, relationships, and with themselves.10 More specifically, research has found subthemes, including a loss of abilities and roles, employment-related losses, financial losses, and a loss of identity and hope.10 Other themes have been reported, including not being understood by those around them and feeling changed as a person.11 Such losses, in turn, potentially change how these individuals perceive the world.

What is the Normal Grieving Process?

There is no single way to grieve and no single definition of “normal” grief.12 It is, in fact, “normal” for people to experience a range of intense emotions, negative cognitions, and altered behaviors for a period of time after loss. The Kübler-Ross model, the most widely cited framework, is popularly known as the Five Stages of Grief:13

denial anger bargaining depression acceptance.

Experts have criticized this model’s sequential process and its assumption that the stages only last weeks or months. Those that critique the model tend to forget that the stages are responses to feelings that may last for minutes or hours. Individuals tend to go into one stage, out of another, and back again. They do not enter and leave each individual stage in a linear fashion. According to the Hospice Foundation of America, it is helpful to think of the five stages of grief as, “a roller coaster, full of ups and downs, highs and lows.” This more accurately describes the experience of patients with a chronic illness, such as persistent pain.13

During Stage 1, denial and shock help a patient cope and make further survival possible. As the individual proceeds through the process of grief, however, denied feelings begin to surface, such as anger, an emotion people are most used to managing. During Stage 2, many other emotions build, such as guilt, which is often seen alongside bargaining in Stage 3. Patients wish to return to their life before their loss or “go back in time.”

After bargaining, their attention tends to move squarely into the present. Stage 4, depression, may feel as though it will last forever, but it is a necessary step along the pathway to healing. Acceptance, the final stage, is often confused with the notion that people must accept needless suffering. Acceptance does not mean that a person has to give up all hope and feel defeated. Rather, people can maintain hope for a better future while accepting their unpleasant reality. In addition, acceptance does not mean that the sufferer has to accept someone else’s version of their condition (eg, being given a bleak prognosis and later proving the doctor wrong). Acceptance does not equal “not caring.”

What Can Providers Do to Help?

Studies have shown that a patient’s feelings of loss and grief related to chronic pain may not be obvious to healthcare workers working in pain clinics.14 This may be because grief resembles chronic pain.5 Frontline practitioners may, therefore, consider:

1) asking patients about acknowledging any losses they are experiencing

2) assessing their needs

3) connecting patients with resources that can help with grief such as support groups and psychotherapists.12

Acknowledging Losses

The primary step in helping patients is to talk with them about their losses. Talking about these losses may help explain the patient’s circumstances. Often, however, providers may be unsure about how to speak to their patients in this manner. Providers may begin by addressing their own anxieties about loss. This way, they will be in a stronger position to respond well to their patient. If providers avoid a patient’s grief because they do not know what to say, the avoidance may only serve the provider’s needs instead of the patient’s needs.

The isolation the patient feels may be almost as painful as the shock and sadness they feel from the loss of a healthy life. Providers should admit when they do not know what to say; sometimes it is best to just say, “I’m so sorry you’re going through this.” This only requires intention and an open heart.15

As part of an in-depth interview, patients should be invited to “tell their story,”10 and providers should be encouraged to listen without interrupting. Sitting beside a patient, for example, may provide extra comfort.

Assessing Needs

Frequently, individuals exist somewhere along the continuum of grief. If the grief persists beyond 6 to 12 months and is associated with other cognitive, emotional, and behavioral symptoms, however, then it should be considered complicated grief. Complications are evident when the manifestations of grief are absent, are of extreme intensity, prolong, or become distorted in some manner.16

Complicated grief can lead into major depression. The APA’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) abolished the bereavement exclusion applied to depressive symptoms lasting less than two months.17 The exclusion was omitted for several reasons: to remove the implication that bereavement typically lasts only two months; to recognize it as a severe psychosocial stressor that can precipitate a major depressive episode; to underscore its genetic influence; and to note that it responds to the same psychosocial and medication treatments as non-bereavement-related depression.17 It has been noted that depressive symptoms are common following bereavement, with as many as 45% of patients meeting the criteria within the first year of their loss.16 The provider should also watch for a resurgence of symptoms during anniversaries of the patient’s diagnosis and/or holidays.

Providing Resources

Frontline practitioners should be encouraged to inquire about a patient’s support system and suggest ways to build it with friends, family, support groups, spiritual leaders, or in a psychotherapeutic setting.12

Support groups give individuals another opportunity for empathy, a sense that they are not alone, and an opportunity for gaining new insights and coping skills.18 The American Chronic Pain Association (ACPA), for example, offers a wonderful opportunity for patients with chronic pain to connect with a support group in their area or start a group of their own.19 The goal of an ACPA group is to provide support, validation, and education in basic pain management and life skills.

Inquiring about a patient’s spiritual beliefs may help providers identify the role such principles play in their lives, whether it be religion, nature, art, or traditional healers.

In terms of psychotherapy, the goal of treatment should be for the patient to learn to live with the loss related to their pain.20 Learning coping skills to manage the pain may help rebuild self-esteem and relationships. Acceptance & Commitment Therapy (ACT) is just one such tool that can help patients find a way to live a fuller life despite their pain. ACT is one of the more actively researched approaches among the third wave of developing psychotherapies.21 It is a style of therapy with flexibility and a therapeutic process that is more experiential than didactic. What sets it apart is that it is a form of clinical behavior analysis that uses acceptance and mindfulness strategies mixed with commitment and behavior-change strategies to increase psychological flexibility.

Cognitive-Behavioral Therapy (CBT), on the other hand, may help with restructuring negative thoughts and unhealthy behaviors to provide more adaptiveness. CBT for pain is based on the cognitive-behavioral model, which is grounded on the notion that pain is a complex experience that is influenced by its underlying pathophysiology and the individual’s cognitions, affect, and behavior.22 CBT is a structured, time-limited, present-focused approach to psychotherapy that helps patients engage in an active coping process aimed at changing maladaptive thoughts and behaviors that can serve to exacerbate the experience of chronic pain. Research has shown that grief therapy has been effective in reducing pain and depression, usage of medications, and visits to psychological healthcare providers.23

Frontline practitioners may also consider complementary and integrative health (CIH) approaches. Various CIH therapies may ease a patient’s transition through grief.12 Movement programs such as yoga and massage may also help ease stress and promote relaxation while recreational activities such as art and music may help a patient transform feelings and emotions related to their diagnosis.24,25

Conclusion

In theory, after a chronic pain condition diagnosis, patients can still live to their fullest ability again but not until they have been given enough time to grieve. Grief is a multifaceted response that may occur when someone suffers from chronic pain. Researchers have demonstrated that individuals who suffer from chronic pain experience physical, cognitive, behavioral, social, and philosophical losses. The role for practitioners is to meet a patient’s grief at each of these dimensions through acknowledgment, assessing needs, and providing resources.

Last updated on: May 3, 2019

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Chronic Pain and Psychopathology in the Veteran and Disadvantaged Populations