Carolyn Messner, DSW, MSW, LCSW-R, BCD, has been an oncology social worker for 30 years. She is currently director of education and training for CancerCare, professor at the Hunter College School of Social Work, and president of the Association of Oncology Social Work. In this interview, Dr Messner identifies the most common emotional and practical issues experienced by patients with cancer, cancer survivors, their families, and caregivers and discusses how nurses and social workers can work together to provide support and counseling.
What are some of most common psychological and social problems you see in patients with cancer?
The most common problems are practical problems but there are also emotional and social issues associated with a diagnosis of cancer. Some practical questions that immediately spring to mind when a person is diagnosed are:
- Where do I go for my care?
- Who's going to pay for it?
- Who will take care of my children, or my spouse, or my elderly parents?
- Which treatment do I choose?
- How do I get information?
- How will I deal with the side effects?
Then there are concerns about sharing the news with family, friends, and coworkers, such as how many people to tell and how to tell them. Some people will tell everyone about their cancer, whereas others are very circumspect. So the practical issues weave into the social and emotional ones.
What are some of the issues regarding employment?
Many people have to continue working full-time to maintain their health benefits, and for people who are in the workforce, there are a lot of issues around disclosure. There are workplace protections for people if they disclose or choose not to disclose. The Americans with Disabilities Act and the Family Medical Leave Act offer protections, but they require that the person disclose to the human resource department or to his or her direct supervisor the reason some workplace accommodation is needed. If one just begins to take time off without giving a reason, it could put their job in jeopardy.
There are social issues in the workplace too. Patients are often concerned about how their coworkers and supervisors will react if they disclose their illness and worry that they may view them as unable to do the job.
You've spoken about the practical issues. What are some of the emotions patients may experience?
Emotional concerns for a person newly diagnosed with cancer include:
- How am I going to get through this?
- How am I going to help my family or my loved ones get through this?
- How do I deal with the different feelings that I might be having?
There are also spiritual issues, not necessarily in the traditional sense, such as:
- Why is this happening to me?
- How does this interface with my belief system?
- How does this fit in with my plans about where my life was supposed to be going?
For different people, these reactions ocurr incrementally, that is, at different stages along the course of the disease. The initial diagnosis is often very difficult because it comes as a shock and they need time to absorb it. Once they complete treatment, people begin to rebound and feel a bit more connected back to normalcy, but the whole phase of survivorship comes into play. At this stage, people begin to be concerned about possible recurrence of the disease.
Different types of cancer may have different effects on a patient's quality of life and invoke different psychological reactions. For instance, someone with a difficult-to-treat type of cancer like pancreatic or liver cancer may have a different reaction from someone with early-stage breast cancer. Men and women and younger and older patients may react differently as well. For younger patients, concerns about fertility can have a dramatic impact on their thinking about the future. It's also difficult for older patients. Some patients have never felt old until they were diagnosed with cancer. And older patients' perception of cancer may be based on the experience of family members or others who had cancer years ago before the newer, more effective treatments were available.
What is the role of nurses versus social workers in dealing with psychosocial issues and how can they best work together?
In my own experience, oncology nurses and oncology social workers work very well together. Many social workers are employed in the hospital or community cancer center setting but increasingly they are employed in physicians' offices as well. Some patients prefer to talk to one person about their concerns, but others need as many people as possible to offer support. Oncology nurses in a physician practice who are administering the outpatient chemotherapy tend to get to know patients very well. If there is a social worker in that practice, he or she might run a support group and work with those patients as well. The oncology nurse may help with the medical aspects of the patient's concerns, but they often also talk about the fatigue or other symptoms that carry over into the psychosocial realm because they impact one's ability to work, to spend time with the children, or do household chores. The best model is all of us working very closely together. Social workers are trained to talk to people systemically about their concerns and the issues they confront.
There are many organizations like CancerCare throughout the country that use social work staff to run support groups and online groups and spend a huge amount of time with patients talking about their concerns. These organizations may be a particularly useful resource in rural communities that do not have a lot of resources for patients.
In the world we live in today, interdisciplinary practice is the best for patients because we are working together and sharing. Cancer is a complicated disease, and it requires a team of healthcare professionals whose purpose is to help people. In other words, it's up to all of us as health professionals to refer back and forth to each other so that we can direct patients to the people who can best help them. None of us can do everything alone. We have to do it as a team. We can't take away the disease, but we can do something that enhances patients' quality of life.