Elizabeth Clark is the former Executive Director of the National Association of Social Workers. Dr. Clark’s clinical specialty areas are oncology social work, and loss and grief.
 
Q. You serve(d) as Executive Director of the National Association of Social Workers (NASW), the largest membership organization of professional social workers in the world. Can you tell our readers more about the work of NASW?
 
A. NASW was established in 1955 with a dual purpose: One goal is to further the field of social work, and the second goal is one that focuses on social justice, including social policy. The Association is committed to education and professional development for social workers. We are also just as strongly committed to advocacy—social workers are bound by our Code of Ethics to serve as advocates for those they serve.
 
Q. What are some of NASW’s initiatives in palliative and end-of-life care?
 
A. NASW serves on many coalitions with like-minded organizations, such as HFA and NHPCO to represent interests in end-of-life care. For instance, NASW is examining the Affordable Care Act, as are some of our partners, and its impact on palliative and end-of-life care. NASW has developed Standards of Practice for Social Workers in Hospice and Palliative Care Settings, and we are the only organization that credentials hospice and palliative care social workers.
 
We have recently become involved in the work of FHSSA, which is an organization that works to provide compassionate care in Sub-Saharan Africa; we are taking a group of social workers and nurses to Kenya next fall. Hospice in this part of the world has a much broader definition and serves as a social service agency, so this trip will be a great experience.
 
One new and exciting initiative that I am particularly proud of is the establishment of the Bernice Catherine Harper Scholarship Fund. Bernice is a renowned social worker who has dedicated much of her professional life to hospice and end-of-life care. She confided to me once that, when she was younger, she had always thought she would become a missionary in Africa. So, our work with FHSSA led to the establishment of this scholarship in her name, to help fund professionals in Africa to become educated in this field.
 
NASW also works closely with aging and disease-specific organizations. Much of our work is in areas like cancer, where unfortunately, a significant number of people with that disease will die. One area of focus for social workers is the issue of medical adherence.
 
Q. What are some of the concerns around this issue?
 
A. Social workers play an important role in helping patients with medication adherence (and please note, we prefer the concept of “adherence” as opposed to “compliance.”) Using the example of cancer medications—more treatments have moved from IV to oral treatment, but the chemotherapy regimens can be very strong and hard to follow. A major function of adherence lies in communication—if people really understand the ramifications of adhering, or not, to a particular regimen they are more likely to follow through.
 
Social workers are excellent patient educators. They are skilled at framing information to an individual’s specific context.  For instance, a great amount of prescriptions are never actually filled. There can be many reasons why, and a common one is financial; the patient simply may not be able to afford it. Social workers understand the range of issues that patients face, and can be a resource to help get the medications they need or help connect them to programs that will help pay for the medications. If the issue is that the patient is not taking the medications properly, the social worker may consult with the pharmacist who can help the patient understand their medication regimen. I’m always proud to know that social workers have that ability and training to really see the person within his or her individual environment and respond accordingly.
 
Q. Those skills would seem to be particularly crucial when a patient is facing a life-limiting illness.  How does the social worker help a patient and family cope with that experience? Has your own background in health care and social work, especially oncology, affected your outlook on the role of social workers in hospice and palliative care?
 
A. Social workers play a significant role from the point of diagnosis through the grief process, and not only in hospice care. Oncology presents a particular challenge; we are understaffed in the area of oncology social workers, and this issue will continue to grow. It is projected that by 2020, there will be 20 million people living with a history of cancer (currently, that number is about 12 million.) Social workers deal with cancer in every aspect of their practice; of course this will include, for many, palliative and end-of-life care. There is a real need for continuing to educate social workers about their role in helping patients and families cope with cancer at the end of life.
 
Social workers help people confront loss in a variety of ways. People coping with cancer may lose their ability to function in a way that is familiar to them; they of course may lose hair, or their ability to keep a job, or the role they played in their family. Social workers are well-equipped to help with these losses.
 
I also feel it’s critical to say that social workers have a role in helping people in these situations stay positive. I think we have underutilized the concept of “hope,” especially in the context of coping with a life-limiting illness. Hope, by definition, can never be “false;” social workers are trained to look at the therapeutic role that hope can play.  They can help the person restore that sense of hope, or even reframe how they define and use it.
 
Q. One of the hallmarks of hospice care is the Interdisciplinary Team model. How does that model help support the social worker, and what do social workers bring to that team approach?
 
A. Just as social workers support patients and families, they also support other team members. When I was a practicing hospital social worker, I used to hold a “psychosocial success conference” each month. This activity gave us a way to note those actions when a social worker did something that went above and beyond to help. A great example was about the man who couldn’t  leave the hospital but was about to celebrate his 50th wedding anniversary; the social worker stopped on her way in one day and picked out a card for him to give his wife. 
 
Sometimes social workers don’t realize the importance of these acts, or don’t even stop to realize that this was a “success”—they just see a need and they work to fill it. One role that social workers can play on the IDT is to extend this understanding of “success” in serving patients and families.
 
Q. In a NASW job profile about hospice and palliative care social workers, I read that, “Self-care is vital to professional and personal sustainability in hospice and palliative care.” Although this work can be filled with successes, what types of self-care can be most useful for a social worker facing grief and loss every day?
 
One ongoing concern in this profession is that social workers witness suffering frequently, and suffering changes us. We must continually find some way to integrate that suffering, both professionally and personally. Suffering can bring growth, but it’s critical to also consider the impact it can have.
 
The concept of self-care goes beyond preventing burn-out. In fact, I’m not convinced that any well-trained social worker ever really “burns out.”  We know what it looks like when the work isn’t going well—that sense of helplessness or a feeling of low self-esteem. I always worry about a social worker when she or he won’t take time off, because there’s a perception that “no one can do my work while I’m gone.” I was fortunate to visit St. Christopher’s Hospice in London, and staff was required to take a one-week vacation every 12 weeks. That acknowledgment of the need to restore and regroup was always very impressive to me.
 
I also am concerned that there is not enough attention paid to the issue of Professional Grief. Professionals often form strong connections to those they care for, but yet when there is a death, the role of the social worker is not seen as a griever.
 
Ken Doka’s work on disenfranchised grief is very relevant in these situations. One strategy that social workers can employ in this area is to know their own strengths and weaknesses. For instance, when my children were young, I found that it was very difficult for me to work with dying children the same age. You need to know your own strengths and weaknesses; that can make you a better professional.
 
For social workers, it is really an ethical issue to admit what you can and cannot do. A true “balance” may never be possible. Social workers work with vulnerable people, and people in pain. This work is challenging and emotional so there is a direct correlation between self-care and practice; a peer support network can be a vital way to work through these challenges
 
Q. You are serving as a panelist for HFA’s upcoming program, “Beyond Kübler-Ross: New Perspectives on Death, Dying and Grief.” What do you see as an important message for social workers to extrapolate from an examination of past and current thinking on loss, grief and bereavement?
 
A. I entered this field, in large part, because of Elisabeth Kübler-Ross. I heard her speak and she was absolutely remarkable, and she truly did inspire me as a young professional. She brought tremendous value to the field of death and dying, particularly in the emphasis she put on listening to the patient with compassion and dignity. She emphasized the importance of just having the conversation about death and dying.
 
And of course, even in her own book, she notes that she did not necessarily intend for her Stage Model to have the linearity that has since been assigned to it. The major problem with that model is that it became prescriptive—this is what grieving people “have to” go through. And even worse, her original and pioneering focus on actually listening to the person has been lost—instead, many professionals simply impose the theory over the actual person.
 
Again, this goes back to what I see as the real strength of the social worker—the social worker listens, then helps each person to find his or her own path.
 
Q. How can social workers translate a more academic look at what is “new” in grief and bereavement and translate it into the day-to-day practice with  patients facing the end of life and their loved ones?
 
A. I think sometimes people forget just how pervasive grief can be. I am continually appalled when I hear someone on TV say, “I am sorry for your loss.” This sentiment does such a disservice to what is truly the task, the work of grief which includes how you deal with loss, the tasks of grief and the restorative aspects of grief.
 
I have a teaching video I like to use in which a grieving mother talks about experiencing pain—physical pain—for over a year after her child’s death. She describes how, eventually, that pain shrank but that it was kept  “in a chamber in her heart” and that any time she could reach in and access it.
 
Grief is so multifaceted, and sometimes we underestimate the true impact it has on people. There is still so much work that needs to be done to help educate both professionals and the public about what grief really is.
 
And social workers have an important voice in this discussion. A professional team, supporting a dying patient and their family, is diminished without the presence of a trained social worker. I am proud of the work that NASW does to ensure that social workers continue to have a strong role in end-of-life care.
 
 
Elizabeth J. Clark, PhD, ACSW, MPH, former Executive Director of the National Association of Social Workers (NASW).  Dr. Clark’s clinical specialty areas are oncology social work, and loss and grief.  She is the founding editor of the journal Illness, Crisis and Loss, and is the editor of several books including Social Work in Oncology:  Supporting Survivors, Families, and Caregivers, published by the American Cancer Society.  She is the project director for the Cancer Survival Toolbox®, a self-advocacy training program for persons with cancer, which is sponsored by the National Coalition for Cancer Survivorship (NCCS).  She sits on the Board of Directors of C-Change, Collaborating to Conquer Cancer, the Leukemia and Lymphoma Society, and the Foundation for Hospices in Sub-Saharan Africa.  She is past president of NCCS, and past board member of the National Hospice and Palliative Care Organization.  Dr. Clark received the Leadership in Oncology Social Work Award from the Association of Oncology Social Work, a Ray of Hope award from NCCS for her work on the Cancer Survival Toolbox® and the DeWitt Clinton Masonic Award in Community Service for her work in cancer survivorship.  Dr. Clark holds a Bachelor’s and Master’s degree in social work and a Master’s of Public Health from the University of Pittsburgh, as well as a Master’s and Doctorate in medical sociology from the University of North Carolina.  She is a recipient of an Honorary Doctor of Humane Letters degree from Wartburg College in Iowa for her work on social justice.