The grief and experience of loss felt by many patients is an often overlooked component of chronic pain.
During her presentation, "The Multifaceted Nature of Grief and Bereavement," Thursday at PAINWeek, E. Alessandra Strada, PhD, said that although grief and bereavement are generally considered "soft topics," they are actually deceptively simple, with far-reaching implications for patients' prognosis, health, and well-being.
Strada is an attending psychologist in the department of Pain Medicine and Palliative Care at Beth Israel Medical Center. She is also an assistant professor of Neurology and Psychiatry and Behavioral Sciences at the Albert Einstein College of Medicine, and assistant professor of East-West Psychology at the California Institute of Integral Studies in San Francisco. She also runs the Supportive Treatments and Resources program at Beth Israel.
According to Strada, grief is a complex construct that "needs to be unfolded, deconstructed, and fully understood in its manifestations." She said that our culture does a poor job of supporting grieving processes; people learn early on that they’re "supposed to grieve on their own, quietly, without too much affect." Actually, patients often get the subconscious message from providers and others that "if they could not grieve at all, that would be great," said Strada.
In medicine and mental health, clinicians are well trained to "suppress, repress, ignore, deny, disconnect from, and move away from their own grieving processes as people and professionals. They’re supposed to convey that they are ‘keeping it together,’” said Strada. The problem with that approach or philosophy is that the healthcare professionals who subscribe to it and practice it can’t fully understand patients’ experience of grief and loss. Clinicians should always remember that “in pain and palliative care, grief is always in the room. It is the third person in the room, whether or not the clinician or the patient acknowledges it, and it affects everything from your interactions with patients and to the construction of the treatment plan, said Strada.
Grief "is an individual journey that is never the same for two people, you never know where the journey will take you; sometimes there are moments of relief, and sometimes there are dark moments," said Strada, likening the experience of grief to the dark woods in which Dante found himself. "Just like many pain patients, he needed a guide to lead him out," she said.
Strada said that she advocates the use of a structured approach that starts with fully understanding the process of grief, describing chronic illness and the grief that attends it as the "land of constant loss; patient experience loss of function, roles, relationships, status, hope, and meaning, and it starts at diagnosis. Their identity changes and they become 'the cancer patient' or the 'the pain patient.' They become the diagnosis."
The emotions that attend the grieving process are "expansive emotions" that if left alone can become damaging to the patient. Strada said that anger is "a perfectly normal component of grief, but the problem is that if you don’t let it unfold, it can move to resentment and bitterness. Sadness is another perfectly legitimate grief reaction, but if you don’t channel it creatively it can move to despair."
Strada noted that there is actually a quite robust literature on grief and loss models, citing the work of Lindemann, who wrote one of the first psychiatrically oriented papers on grief and described the process of grieving survivors to gaining "emancipation from the deceased" and needing to transform their worldview and relationship with the deceased. She also cited the work of Parkes et al, who likened grief to physical injury and described the "numbness, yearning, disorganization, and despair" experienced by patients, and Worden, who devised the "task model of grief" that is widely accepted today.
In response to a question from the audience about the difficulty processing the loss often experienced by elderly patients who have lost a spouse or loved one, Strada said that she thinks this may be due in part to these patients having less "emotional energy" that leads to them passively accepting the loss. She also noted the phenomenon of seemingly healthy elderly patients deteriorating soon after the death of a spouse, pointing out that there have been studies showing that bereavement exposes people to higher mortality risk within the first year, possibly due to self-neglect, and that other studies have shown that the grieving survivors of deceased spouses actually often exhibit decreased cardiac output, a phenomenon known as "broken heart syndrome."
Clinicians need to help patients accept the reality of loss, said Strada. They must embrace a view of grief and bereavement that allows patients to fully experience and process the pain of grief and not encourage them to disconnect from it or suppress it. They must also examine their own individual grieving styles in order to be more fully attuned to patients' grief reactions.