Welcome to Yale Cancer Center Answers with your hosts doctors Francine Foss, Anees Chagpar and Steven Gore. Dr. Foss is a Professor of Medicine in the Section of Medical Oncology at the Yale Cancer Center, Dr. Chagpar is Associate Professor of Surgical Oncology and Director of the Breast Center at Smilow Cancer Hospital and Dr. Gore is Director of Hematological Malignancies at Smilow. Yale Cancer Center Answers features weekly conversations about the research, diagnosis and treatment of cancer and if you would like to join the conversation, you can submit questions and comments to firstname.lastname@example.org or you can leave a voicemail message at 888-234-4YCC. This week you will hear a conversation about oncology social work with Nancy Varga. Nancy is a licensed clinical social worker for the Thoracic Oncology Program at Smilow Cancer Hospital. Here is Dr. Anees Chapgar .
Chagpar Nancy, maybe we can start off by having you tell us a little bit more about what exactly a social worker does in the context of a cancer hospital?
Varga When a patient arrives we meet with them immediately to try and alleviate some of their stress. They meet with the team, they meet with the nurse, the nurse coordinator and the social worker, usually a fellow, and the social worker comes in and meets and does a needs assessment. We meet the patient, we talk to them about their initial diagnosis and how that has impacted their lives, usually it is a fairly difficult thing to learn and sometimes we are meeting them for the first time as they are learning their diagnosis. So, we meet with them, we meet with their families as they usually come with a family member and we explain what we are there for because a lot of people do not understand what social workers do. We help patients to process their diagnosis and to begin to feel like they can talk about it. We provided counseling, we provide support, we provide assistance with resources, giving them information, helping them to navigate the facility and helping them to feel a little bit like they know somebody at the Cancer Center that is going to be familiar and kind of hold their hands through this process and make it livable because once you have that diagnosis you just do not see anything passed that.
Gore What you just described sounds like about 5 hours of work, is this all done within a half hour or an hour, how much time you do you have?
Varga It is a difficult thing to try and find that time but actually people are usually pretty forthcoming when they first get to the doctors, they want to talk and in fact they have done studies, and they know that the stress level at the beginning of an appointment is very high and by the time patients leave it has dropped immensely just from being at the doctors, knowing that they have a plan and knowing that there are people there that are going to help them. So it can take anywhere from 15 to 20 minutes to an hour and a half and sometimes 2 hours if people are really struggling with their diagnosis and what’s in front of them.
Gore Do you do both sort of physiological support as well as provision of services or thing like durable hospital beds and things like that, do you get involved with that?
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Varga No, care coordinators handle much of the home care and durable medical equipment. Social workers have many hats, and while in school I was in fact trained as a group worker, you can do case work, you can choose policy and there are many different aspects of social work, and I chose medical social work to go into because I had an experience in my own life where I felt that I was asked to make some medical decisions that I was not prepared to make and after having that experience I saw that nobody should have to make those decisions and not be prepared and not have somebody guide them through thhat process. So, I went to school and did a lot of training in oncology and end-of- life to prepare myself and found that I fell in love with oncology and the challenges that brought and we do a lot of psycho-oncology. Certainly if somebody has an issue where they have had a psychiatric history, we will refer them for more intense therapy but certainly we do counseling and help them to evolve through the process and the journey of their cancer treatment and help them to create coping strategies so that they can more easily manage their feelings about their cancer diagnosis. We also do a lot of family work to help them be able to talk about the diagnosis, sometimes they do not like to talk to each other about the diagnosis, it’s kind of the elephant in the living room and it is a lot easier to talk to somebody that they do not know, they do not have to protect from their feelings or their fears. They do not want to let on that they are having any fears, so they present themselves as stoic for each other but then you find that nobody is really talking about anything.
Chagpar How do you do that? It sounds like a vital role for a social worker is opening up the lines of communication between a patient and their family and their support system, how do you bridge that? Is your relationship strictly with the patient or do you do family counseling?
Varga All of the above, I try to connect with that person at the first visit. Sometimes I cannot meet with them then and I make a phone call to them at home and try to set-up some time to meet with them and their family member at the next visit. I also facilitate a lung cancer support group and encourage people to come to that, but going back to engaging people in the therapeutic process it can be very slow, it can mean that I meet with somebody for 10 or 15 minutes each time they come in and then after a while they begin to say, oh, there is Nancy and I need this and I could use some help with that, or I do not know how to talk to my children, etc. I realize that often if people are having side effects, their children know that they are ill. So they begin to wonder how they are going to talk to their children. We do have a program at Smilow called the PACT program, it is parenting at a challenging time, where we make a referral to a team and a social worker or psychologist will meet with the parents to talk to them about how to talk to their child or their children or grandchildren about their cancer diagnosis.
Gore I think that is really important, I know that is a huge thing for many of my patients that have chronic leukemia, they do not feel the need to talk about it and I encourage them to be as open
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as possible but many of them until they start active therapy just feel they should not or do not know how to address that and I see that is a big stressor for them.
Varga Yeah, it is, it is a stressor for the entire family and children will pick up the energy of what the family is going through, whether they are talking about it or not and people like to think that that is not happening but it is.
Gore We often have patients from other cultures where there is a different approach to the patient being the center piece of the information flow?
Varga Yes, it certainly has happened where families have approached us and said, in our culture our mother or father or grandparent does not get bad news from the doctor, it comes through us and what I have done in the past is approach that person with that information and get their permission to talk to their family rather than them.
Gore You mean the patient, ask the patient if that is what they prefer?
Varga Yes, ask the patient if that is what they prefer, and if they do, then we try to honor their wishes about that but yes and we try to make room for any type of cultural distinction, any rituals that people may have that are very different than some of ours but we really try to make them as comfortable as possible around those issues even when some of them can be dangerous for the patient who is being treated. We try to work with people to help them to understand how this goes against what we are trying to do and get them on board rather than alienate them.
Gore Is your experience, under such circumstances, that oftentimes the patient whom the family feels should not know agrees that they should not know, or do you find more often they are saying no, I do not think that way?
Varga When it is cultural, I think that the patient usually agrees and if it is not cultural, if it is family dynamics it can be a very different thing.
Gore Right, interesting.
Chagpar Nancy, a lot of this plays into patient-centered care and that is kind of a tenant that a lot of us believe in, so when we think about patient-centered care, I would imagine that various patients respond to therapy and to communication styles and to support in different ways. Can you talk a little bit about how you can tailor what you do with patients, I know that you were talking a little bit about some of the support groups that you have versus individual counseling, which you also do. Can you talk a little bit about how those may be better for some people and not for others and how you can really tailor what you do around your patients?
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Varga The support groups are very helpful for some people and not helpful for others because they can be fairly resistant to wanting to share or wanting to open up and are afraid, afraid that if they say something then it makes it worse, or they will not be able to handle the emotions.
Gore We are going to have to take a short break for medical minute and we are certainly going to want to pick up on that after the break. Please stay tuned to learn more about more information about oncology social work with Nancy Varga.
Minute In 2014, 200,000 Americans will be diagnosed with lung cancer and in Connecticut alone there will be over 25,000 new cases. More than 85% of lung caner diagnoses are related to smoking and quitting, even after decades of use, can significantly reduce your risk of developing lung cancer. New treatment options and surgical techniques are giving lung cancer survivors more hope than they have ever had before. Clinical trials are currently underway at federally designated comprehensive cancer centers such as Yale Cancer Center and Smilow Cancer Hospital at Yale-New Haven to test innovative new treatments for lung cancer. Advances are being made by utilizing targeted therapies and immunotherapies. The BATTLE-2 trial at Yale aims to learn if a drug or combination of drugs based on personal biomarkers can help to control non-small cell lung cancer. This has been a medical minute brought you as a public service by Yale Cancer Center and Smilow Cancer Hospital at Yale-New Haven, more information is available at yalecancercenter.org. You are listening to the WNPR Connecticut’s Public Media Source for news and ideas.
Gore Welcome back to Yale Cancer Center Answers. This is Dr. Steven Gore and I am joined tonight by my co-host Dr. Anees Chagpar and our guest Nancy Varga. We are discussing oncology social work. Nancy, before the break we were talking about patient-centered care and about how some patients might respond better to individual one-on-one therapy and others to a group situation.
Varga I mentioned that some people, they feel very private and they are afraid to come to support groups, they do not like the word support, they feel like they do not need that and sometimes they wait quite some time before they feel that they are ready to do that. Once they get there they find that there is a host of support for them at that group they find that they have things very much in common, they get practical advice, they get to talk about their experience and find that others are going through the same experience and they find that they are not alone and they are not going crazy, in fact, one of the things that we do at the beginning of our support groups is we have a reading that basically says we are not alone, we are going through this together and people really respond to that idea that they are not alone and that is helpful.
Chagpar But some people, even if they are not at the beginning part of their journey, may simply be more private people and may respond more to an individual effort, how do you as a social worker parse
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out what kinds of therapies are best for a given individual, what kinds of things are in your armamentarium to provide that patient-centered care that you were talking about?
Varga I think that we really have to take our cues from the patient, from the person that we are talking to and from their family situation and we can read what they are sending out to us and respond to that, although there are times when we just have to kind of forge ahead and approach them and talk to them about some of the realities in their lives so it really is an individual choice of ours, intuitive but also our education about approaching different people with different types of therapies. Sometimes people respond really well to just stories, just telling stories and before you know it they start talking about their own experience but they do not always want to start out talking about their own experience.
Chagpar We talked a lot about the counseling aspect of social work and I would imagine that at different institutions that counseling part is provided by a variety of people, whether it is a chaplain, a psychologist, a social worker or psychiatrist. Do you interface with all of those people and how do you parse out who does what part of the counseling?
Varga The social workers do the main counseling at our facility. The chaplain does get involved often with the inpatient service. I work in outpatient and so the chaplain becomes more involved if the patient is responsive to that. A psychiatrist is involved if we request that, as I said before what we often do is refer, if somebody needs more than we are able to provide for them, we refer them to somebody where they can perhaps get medication management. The oncologist certainly does not feel that they are the person that should be managing psychiatric medication for somebody who has severe depression or bipolar disorder, so we refer them to a therapist or psychiatrist that we know of in the area that are more appropriate.
Chagpar I would imagine that there are many other things that social workers do as well. Do you have patients, for example, who may come to you and say, you know, I am having financial hardship, do I go to my social worker? I am worried that my employer is going to fire me or discriminate against me because I have cancer, do I go to my social worker? My fiancé is thinking about leaving me, do I go to my social worker? What is the purview of the social worker or is this strictly counseling?
Varga It is all of the above and more. We do help people navigate their employers and their employment situation with assisting them and guiding them with how to proceed to the next step and talking to their human resources. Often people are afraid to say anything at work about their situation for many reasons, but we help to guide them through that. We also help them to understand the application for social security disability if they know that they are not going to be able to go back to work right away or at all. So, financially we have the accessibility to help people apply for grants. There are different programs in Connecticut that we utilize. They are limited, but we do have some success at obtaining financial funds for people and there are other programs that we
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can connect them to. Often one of the biggest problems people have is a lack of support or a lack of transportation to and from their appointments and that is something that we run into quite a bit. Families are initially always very happy to say, yes, we can be there and we will help you and then they find out that they also have things that happen in their own life and just cannot be there for transporting the patient, sometimes daily for treatment. So we run into that and helping the family to arrange or providing information about resources for transportation, and that is actually a big issue that we confront, transportation, child care issues.
Gore You had said that one of things that brought you to social work were personal experiences in medical decision making and it sounded like maybe there was something about end-of-life decision making, this was the impression I was getting. Does each social worker in the disease area deal with end-of-life? I know that Yale has a palliative care program. How do they interface with you, are you the social worker for them or how does that work?
Varga The chaplain often sees people to talk about their advance directives. The social workers and I believe that it is really important for everybody to have advanced directives. So that is something that I try to address early in somebody’s treatment, is if they do not have them to advise them about completing them to provide them with the forms and the information about how to do that. People do not understand really that if they are not married, even if they have lived together 35 years, that that person is not able to make decisions, medical decisions, and they do need to put that down in writing and so that is something that I am often working with people on and people do not like to address that because they also feel that that is something that if they do it, then it will happen. So they are afraid of doing that and they are afraid of talking about it, but we approach it with the family and help them to come to terms and accept that this is something you have in place not because something is going to happen, but just in case, because you do not want just anybody making your decisions for you.
Gore And what about at transition points during a patient’s disease course, where they may be confronted with the questions of switching from an aggressive disease controlling approach to something more like comfort care, I know that is so hard for many patients to face?
Varga I feel that all of us as social workers at Smilow have by that time built pretty good connections with people and we know their families, we are almost intimately involved with their families and that person and we also have a palliative care team that we try to get involved maybe before even that time occurs when we know that there may be issues around pain management or symptom management. The palliative team gets involved and often that is the team that then works hand-in-hand with us around end-of-life. We are geared towards survival and that is our hope and we are the advocates for the patient. So if that is where they are at in their emotional life and their psychological life then that is what we are going to foster with them.
Chagpar This is remarkable that you provide such tremendous care to people going through this cancer
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journey and while sometimes it does end up becoming a discussion about end-of- life often times, it is, as you say, a discussion about how do you get on with your life and survival and so on, but a lot those transition points as you are going through this cancer journey tend to be very difficult both for the patient and their family as you mentioned, but I wonder as you provide all of this support, about compassion fatigue of the team. Tell us a little bit about what that is like to be on the receiving end or on the giving end as a social worker and how you interface with the rest of the care team who also may experience what we commonly call compassion fatigue where it really does take a lot of yourself to give to others?
Varga We really are a team and we really try to take care of each other, along with nurturing our patients, we try to nurture each other. Social workers are a pretty strong team and we are always there to assist each other and we are good support for each other. How we take care of ourselves is to be kind to each other, and as a team we do depend on each other and know that that we will be there and if we are out, then we get coverage, but being kind to ourselves, taking time for ourselves at home and making sure we have a good work-life balance.
Nancy Varga is a licensed clinical social worker for the Thoracic Oncology Program at Smilow Cancer Hospital. We invite you to share your questions and comments. You can send them to email@example.com or you can leave a voice mail message at 888-234-4YCC and as an additional resource archived programs are available in both audio and written form at yalecancercenter.org. I am Bruce Barber hoping you will join us again next Sunday evening at 6:00 for another addition of Yale Cancer Center Answers here on WNPR, Connecticut's Public Media Source for news and ideas.