Loss and Suffering: The Role of Social Work
by Elizabeth J. Clark, Ph.D., MSW, MPH
Although the world is full of suffering, it is full also of the overcoming of it.
--Helen Keller
Experienced social workers can easily recall a situation that involved the witnessing of suffering, a situation so difficult that the details of the memory remain clear throughout their careers. For me, that situation was the death of a mother from lung cancer. I was consulted late in the afternoon because medical staff felt the woman would not live through the night, and her children were there alone. When I arrived, I found her four teenage children clustered around her hospital bed. They were tearful and overwhelmed. Their mother was unresponsive, and despite provision of oxygen and medications, her breathing was quite labored. There was no father in the picture, and there were no relatives or close family friends available to help them. I did not go home that night, but stayed to provide emotional support during their deathwatch. It was heartbreaking to see the fear in their eyes as they waited for their mother’s breathing to stop. In early morning, it did. Their mother’s suffering had ended, but the grief of the four teenagers had only begun.
Witnessing suffering is difficult. Regardless of self-awareness, self-care, and support, witnessing suffering on a regular basis can be overwhelming. Arbore, Katz, and Johnson (in Katz & Johnson, 2006) note that “being present to suffering on a daily basis places huge demands on our psyches, our souls, and our very being.”
Eric Cassel, a physician, wrote a definitive article on suffering that has guided many professional interventions. He defined suffering as the “state of severe distress associated with events that threaten the intactness of the person” (1982), and described suffering and its impact in broad terms. Cassel acknowledged that suffering is ultimately a personal matter, even though one can suffer enormously at the distress of another person. Although it is accurate that suffering usually is linked with physical pain and related symptoms, it goes much further. Suffering affects personal relationships, personal performance, personal transcendence or meaning, even one’s personhood (Cassel, 1991).
Loss and suffering often go hand-in-hand, and social work frequently entails working with individuals who have experienced, or are experiencing, loss. Examples include settings such as nursing homes, cancer programs, hospices, intensive care units, addictions, prisons, and foster care. Although the concept of loss has basic features regardless of the setting, each type of loss has specific characteristics, circumstances, and consequences. For example, loss of a loved one to cancer is not too dissimilar to the loss someone feels when a family member is sentenced to a long prison term, or diagnosed with Alzheimer’s disease, or removed from a family and placed in foster care.
Temporary, sometimes reversible, losses also have consequences. These can include loss of employment, loss of possessions to a fire or natural catastrophe, financial losses, or separation from loved ones as a result of estrangement, immigration, or a lengthy deployment for military service.
Then there are losses that have a personal, direct, and significant impact on the daily lives of the individuals who experience them. Loss of limb, loss of function or ability, loss of sight or hearing, or loss of reproductive capability are examples that often require ongoing and prolonged psychological adjustment and adaptation.
Regardless of the type of loss, one characteristic is fairly constant—every loss is accompanied by a grief response of some intensity. At the same time, we understand the importance of resilience (Greene, 2012), and recognize that individuals are generally resilient, perhaps more resilient than we previously recognized (Bonanno, 2004). We also know that professional interventions may be needed and useful for managing some losses, but not as necessary for others.
For example, the importance and utility of rehabilitation counseling to help veterans and others adapt successfully to loss of a limb or body function is well documented. However, we may question whether and how professionals can be effective when faced with the suffering of a person who has experienced a significant loss by death. The loved one cannot be brought back, so how can we help a bereaved person adapt to the loss and move forward?
There are several important concepts that relate to loss and grief interventions. First is the recognition that grief is individual, variable, and complex. It is not a uniform syndrome, but there are some generalities of experience. Lindemann (1944) described the symptomatology of acute grief that includes the physical distress and psychic pain and suffering that occur in the first few weeks following the death. Whereas acute grief may return for short periods after the initial shock of the loss, this intense level of grief response cannot be maintained indefinitely.
For individuals to move forward, they must engage in, and meet, the challenges brought about by loss and grief. Psychologist J. William Worden is credited with identifying four major tasks that must occur when adapting to the loss of a loved one. These include: acknowledging the reality of the loss; working through the pain and emotional turmoil that follow the loss; finding a way to live meaningfully in a world without the one who is gone; and continuing, but loosening, the bonds to the deceased while embarking on a new life (Worden, 2009). Each of these tasks provides opportunity for assistance in the management of grief and the amelioration of suffering.
Another important factor is that, while bereavement is a static concept (the loved one is gone and you are without the loved one), grief is active. Attig (2011) has noted that grieving is not so much something that happens to someone as it is something someone does. Others describe grieving as forging a transition or a way forward, or, perhaps, a search for equilibrium. In addition to the grief that accompanies the loss of a loved one, the idea of active grieving can be applied to other losses, and it indicates the possibility of positive intervention at various points along the grief continuum.
You may be thinking that you do not want to work in a practice area that includes loss and suffering, that you do not possess the necessary skill set. To some extent, it is impossible to avoid. The school social worker may need to help a child with a life-limiting illness, or a child who has lost a parent or sibling. A social worker focusing on community issues may find her- or himself working with families affected by losses resulting from the opioid epidemic. Social service agencies routinely deal with homelessness, poverty, domestic violence, and mental illness—all issues accompanied by loss and that contribute to personal suffering. Private practice is replete with cases in which unresolved loss, along with grief and personal suffering, are major issues that need to be addressed.
Given the frequency and complexity of loss, social workers in almost all settings need expertise about loss and grief. As biopsychosocial and spiritual assessments are completed, the presence and effects of suffering due to loss and grief should be explored and incorporated (McCoyd & Walter, 2016).
Acquiring Necessary Skills
What do you need to know about loss and grief as a social work practitioner? Perhaps a better question is: what do you already know about the topics and how can you build on what you were taught in your formal social work education? Bernice Harper, one of the foremost experts on hospice social work, developed what she termed “A Schematic Comfort-Ability Scale in Coping with Professional Anxieties in Death and Dying.” Her main premise was that anxiety is inherent in working with those who are dying and their families. The intent of the Harper Comfort-Ability Scale is to help social workers measure their sequence of emotional and psychological progress as they move from anxiety to deep compassion and professional wisdom (1994). Harper stresses the importance of “on-the job” training and the need for expert supervision.
Numerous resources exist for social workers working in end-of-life care. The National Association of Social Workers (NASW) published the NASW Standards for Palliative and End-of Life Care in 2004, and in partnership with the National Hospice and Palliative Care Organization, established the first social work credential in this practice area—the Advanced Certified Palliative and Hospice Social Worker (ACHP-SW) credential. The standards and the requirements for obtaining the ACHP-SW lay out both the education and experience required for demonstrating clinical expertise and for ensuring that the relevant values, skills, and knowledge needed for this area of practice have been incorporated (NASW, 2004).
If you work in a hospital or hospice setting, training in these areas should be available to you. There are also excellent college and certificate programs that offer specialized post-degree training in palliative and end-of-life care. In addition, many practice-specific social work groups provide formal training and continuing education programs regarding loss. Take advantage of these as often as you can.
There is also a large and growing body of social work literature that addresses loss and suffering (McCoyd & Walter, 2016). As a practitioner, it is important to keep current with both research and practice advancements, and, as your expertise develops, consider contributing your own observations, understanding, and research to the social work knowledge base.
Finally, it goes without saying that self-care is essential when working in any practice area, but even more critical when working in settings where suffering, loss, and grief regularly occur. Social workers need to develop professional coping mechanisms to deal with the sadness and anguish they encounter in their varied work settings. Developing professional support and self-care strategies will help practitioners function more effectively, and they will serve as an antidote to burnout and professional grief (Clark, 2011).
Social workers are often required to give witness to suffering, and they usually feel the need to do more than witness. As helping and caring professionals with high ethical standards and an advocacy focus, it is our responsibility to try to ameliorate suffering whenever and wherever we can. There are times, though, when there is little to be done clinically or professionally, when we must accept loss and suffering as a part of the human experience.
It can be difficult simply “being” with clients rather than “doing,” and this can result in feelings of awkwardness, helplessness, and discomfort. At those times—especially at those times—it is important to recognize that even small acts can make a difference in the burden of suffering. Sometimes the gift of your presence, simply accompanying the person who suffers, is one of those small, but most meaningful, acts.
References
Attig, T. (2011). How we grieve: Reclaiming the world. New York, NY: Oxford University Press.
Bonanno, G. (2004). Loss, trauma, and human resilience. Have we underestimated the human capacity to thrive after extremely adverse events? American Psychologist 59(1), 20-28.
Cassel, E. J. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine, 306, 639-645.
Cassel, E. J. (1991). The nature of suffering. New York, NY: Oxford University Press.
Clark, E. J. (2011). Self-care as best practice in palliative care. In T. Altilio and S. Otis-Green (Eds.), Oxford textbook of palliative social work, 771-778.
Greene, R. (Ed.). (2012). Resiliency: An integrated approach to practice, policy, and research. Washington, DC: NASW.
Harper, B. (1994). Death: The coping mechanism of the health professional (2nd ed.). Greenville, SC: Southeastern University Press.
Katz, R., & Johnson, T. (Eds.). (2006). When professionals weep: Emotional and countertransference responses in end-of-life care. New York, NY: Routledge.
Lindemann, E. (1944). The symptomatology and management of acute grief. American Journal of Psychiatry, 101, 141-148.
McCoyd, J., & Walter, C. (2016). Grief and loss across the lifespan: A biopsychosocial perspective (2nd ed.). New York, NY: Springer.
National Association of Social Workers (NASW). (2004). Standards for palliative and end-of-life care. Washington, DC: Author.
Worden, J. W. (2009). Grief counseling and grief therapy: A handbook for the mental health practitioner (4th ed.). New York, NY: Springer.
Resources
Print Resources
Clark, E., & E. Hoffler. (Eds.). (2014). Hope matters: The power of social work. Washington, DC: NASW.
Grise-Owens, E., Miller, J., & Eaves, M. (Eds.). (2016). The A-to-Z self-care handbook for social workers and other helping professionals. Harrisburg, PA: The New Social Worker Press.
Journal of Social Work in End-of-Life and Palliative Care. (Affiliated with the Social Work in Hospice and Palliative Care Network). Taylor & Francis Group.
Online Resources
Association of Death Education and Counseling (The Thanatology Association)
http://www.adec.org
NASW/NHPCO Advanced Certified Hospice and Palliative Care Social Work information booklet. See http://www.naswdc.org/credentials/applications/achp-sw.pdf
Social Work in Hospice and Palliative Care Network
http://www.swhpn.org
Dr. Elizabeth Clark is President of the Start Smart Career Center, which helps women navigate their careers, and she co-authors the Smart Women book series. Previously, she served 12 years as the CEO of NASW. Her clinical background is in oncology, and she has written extensively on survivorship and hope. She holds a doctorate in medical sociology and master’s degrees in social work and public health.