roundtable discussion: addressing the psychosocial needs of cancer survivors

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ALTERNATIVE AND COMPLEMENTARY THERAPIES DOI: 10.1089/act.2010.16406 • MARY ANN LIEBERT, INC. • VOL. 16 NO. 4AUGUST 2010

Jane Hart: In 2005, the Lance Armstrong Foundation conducted a poll of 1000 cancer survivors1 and found that nearly 50% of those survivors felt their nonmedical or psy-chosocial needs were not met by the conventional medical system. Several similar polls followed after that, and one of those polls found that among breast cancer survivors, about two thirds reported unmet supportive-care needs. These are significant findings and really a plea for help from cancer survivors for resources to help them through their journeys and their crises. What are your reactions to these polls?

Hester Hill Schnipper: I do not find these results surpris-ing. One thing that immediately occurs to me is that many people—not just women going through breast cancer, but in-dividuals going through any kind of cancer treatment—are, by necessity, so focused on physically getting through testing and treatments that their psychological or psychosocial needs often get put on hold. It is usually after their treatments are over that those feelings and needs surface. And, of course, that is exactly the time when they also have much less contact with their health care providers. It becomes a perfect storm—when the need may be worse, the availability of help is less.

Kim Day: I agree that sometimes survivors simply hang on during treatment, and when treatment is over, their psychoso-cial needs become more prominent, and people may not know where or who to turn to. It is important to point out that the quality of life with the psychosocial issues that survivors face can be affected very far out—even up to 20 years—from their initial diagnosis and during a time then when they are not plugged in and connected. This is a real problem and an issue that needs to be addressed in our medical communities.

There are also significant regional differences in available services and access to services for people with a cancer diag-nosis. There are generally more programs available to address the psychosocial needs of cancer survivors at some of the larger cancer centers in our country. In many rural settings, however, there may not be the same access not only to major cancer

centers, but to community cancer support centers like Gilda’s Club or Wellness Centers or The Gathering Place,* etc.

Penny B. Block: I think these polls highlight the fact that we lack a systematic plan of care for patients who are going to complete treatment. We often assume that, when patients are done with treatment, they are in a “safe” zone, but I do not think the patients feel that way. So, before active treatments begin, a system has to be put in place so that patients are as-sured that we will not cut the umbilical cord when their treat-ments are over and that it is part of good medical care to plan and schedule follow-up. Patients also need to be encouraged to keep records of the things that they are experiencing or having difficulty with and keep in touch with their nurses, medical teams, and their primary providers about these issues.

JH: What are some of the predominant psychosocial is-sues that cancer survivors face that may not be met through the conventional medical system?

HHS: Broad categories would certainly include concerns about family—and especially about children, if a patient has young children at home. However, there are also concerns about work and employment, which leads very quickly into financial and insurance concerns. There are studies looking at the financial hit that many cancer patients and survivors take, and I think that this topic is very often not addressed. Certain-ly, Kim and I are part of a busy listserv through our national group, the Association of Oncology Social Work [AOSW], and there are a horrifying number of questions and problems coming up daily from people who are getting smashed finan-cially from their illness.

KD: When we look at the younger population of cancer pa-tients, other unmet needs may be addressing fertility issues, and again, the job market. If a person is dealing with lymphoma or leukemia at the age of 23, and has not yet broken into the job market, then that person may be faced with some real challenges.

Sexuality is another big issue. The side-effects from treat-ment and changes in body image affect a person’s sexuality. I have noticed that survivors initially may be thrilled to have survived, and then 2 or 3 years later, they will say, “but now

Roundtable Discussion

Moderator: Jane Hart, MD Participants: Penny B. Block, PhD, Kim Day, MSSA, LISW, OSW-C and Hester Hill Schnipper, LICSW, OSW-C

Addressing the Psychosocial Needs of Cancer Survivors

*See Hart J. The Gathering Place: A community cancer support center in Ohio. Altern Complement Ther 2010;16:163–168.

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MARY ANN LIEBERT, INC. • VOL. 16 NO. 4

I am angry about the way my body looks,” or “now I am an-gry about the loss of libido or premature menopause,” or “I am constantly tired,” Fatigue seems to linger on for many patients. So, the quality of life is affected longer than they ex-pected, and that is probably something that is not addressed very well up front.

PBB: The end of treatment can also be one of the key stress junctures in a patient’s cancer trajectory. Patients tend to be congratulated during that time, and they feel somewhat

relieved and jubilant, because their active treatment is com-plete, and they are being sent home in remission. However, they are also being sent home in a passive waiting mode, and they will come back in 6 months for the next scan. Patients can feel disconnected and even abandoned during this time. They may also experience persistent anxiety about the poten-tial for recurrence.

Then, there is that assumptive world fracture. Spouses, partners, coworkers, and other community connections may say, “well, O.K, now you are done with cancer. Come on back to normal. Resume what you were doing.” But as Hester and Kim mentioned, there are various sequelae, such as fatigue and body disfigurement, that the cancer patient may have to deal with for a long time to come, and nothing really feels normal to such a patient.

JH: You mentioned that cancer survivors may not bring up some of the issues they are struggling with, but what about the clinicians’ responsibility to bring up psychosocial issues? How might patients fall through the cracks in that regard?

HHS: It is variable from practitioner to practitioner, and, to some extent probably, day to day, that a physician or a nurse is very attuned to somebody’s psychosocial needs and is diligent in asking, “how are you doing?,” meaning, “how is your whole life going?” not just “have you been able to eat breakfast this week?” Clinicians may be particularly stretched on a given day, and that may be the day a patient happened to be the neediest.

The providers whom I know are generally very caring about people as whole people and do their best. However, they are indeed often so pressured about everything else they have to get through during appointments that asking about sleep, sex, emotions, or how patients’ children are getting along may be questions that are much further down on the list of medical details that have to be gotten through.

PBB: My saying is that we have to “screen and intervene,” because, very often, in medical centers, the best medical professionals are not aware of some of the difficulties that

patients are having and will have, and there are also time constraints during office visits. So, a plan for assessment needs to be ongoing, and there are good screening measure-ments that will let health care providers know when some-one is suffering.

At the Block Center we use several screening tools includ-ing the Hospital Anxiety and Depression [HAD] scale. We use this tool while people are undergoing chemotherapy or radiation, but, then, we use this scale also in follow-up. There is some research that suggests that the depression and anxiety subscale can be predictive of response to chemotherapy. So, for that reason, in addition to our concern that we do not want patients suffering—and I do not think any medical provider wants patients suffering—we use such screening tests.

JH: And who should administer such screening tests?PBB: Physicians, nurses, and/or social workers and other

health care professionals may administer these screening tools, but the physicians absolutely have to support and encourage use of these tools. I also want to say that the purpose of these screening tests is not to seek out psychological pathology—these patients are having normal responses to abnormal cir-cumstances—and patients need to understand this otherwise they may shy away from the tests. The purpose is to identify patients’ needs and get them plugged in to important resources that can help address those needs.

JH: So, in general, when psychosocial issues come up in a cancer survivor’s life, to where or to whom should they turn for help with these issues?

HHS: Kim and I are probably prejudiced, and I think we probably would both suggest they turn to oncology social workers. Unfortunately, it is probably a fairly small percent-age of all cancer patients in the United States who ever meet oncology social workers, and we know that not every health care setting has oncology social workers. So, probably the most common person is a nurse who these patients may speak with and who, we hope, is informed about resources that are avail-able in their systems or in their communities.

There are also increasing numbers of cancer-patient naviga-tors who may be primary persons who are involved early on in patients’ diagnoses. These professionals are there to help people navigate the system and get the care they need.

In addition, there are many advocacy groups that are orga-nized under the banners of specific diseases such as the Leu-kemia and Lymphoma Society, and I think many people find a lot of help from these groups. People may find these groups online and find out about services that are available online and in their own communities.

KD: A report that came out about 6 years ago, “From Cancer Patient to Cancer Survivor,” in which the Institute of Medicine [IOM] was involved,2 brought this issue up to the forefront. In response, many centers around the country began develop-ing survivorship clinics, and so now nurse–practitioners are often meeting with survivors early on in these types of clinics and giving them treatment summaries and plans for moving

“The end of treatment can also be one of the key stress junctures in a patient’s cancer trajectory.”

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forward when they are done with treatment. The Lance Arm-strong Foundation did a lot of work around devising treatment summaries and care plans for moving forward. However, my guess is that people fall off that radar screen after a while with this too.

PBB: I think it is really important for patients to keep a con-nection with their oncologists and/or primary care providers, so that these patients can check in regularly. Again, patients should keep lists of what they are experiencing, both in terms of physical issues as well as psychosocial concerns, because un-relieved distress is linked to numerous health problems.

In addition, I agree that there are good, reliable online sourc-es that are available 7 days a week, 24 hours a day, because sometimes psychosocial issues seem to recede into the back-ground among spouses, friends, and coworkers, so such people are not always the best to go to for support or help. That is why some of these other resources are so critical.

JH: So, what I hear all of you saying is that there are in-creasing resources for cancer survivors within hospitals in the form of survivorship programs, and physicians, nurses, social workers, and patient advocates are important resourc-es. In addition, there are also increasing numbers of inde-pendent community cancer support centers and credible online resources.

I want to move on now and talk about the need for edu-cation among medical, nursing, and social work students, oncology fellows, oncologists, primary care physicians, and other medical professionals, about the psychosocial issues that cancer survivors face and how to direct patients to per-tinent resources. Your reactions to this? Is this type of educa-tion needed?

KD: I believe it is needed, and having recently read another IOM report, “Cancer Care for the Whole Patient,”3 about meeting psychosocial needs through all phases of a survi-vor’s journey, it was very clear throughout the book that there needed to be more education and awareness among medical professionals, and that psychosocial needs were not necessar-ily being addressed as well as we all thought. So, I think that there does need to be an intentional focus on those aspects of patient care.

HHS: For the last 15 years, I have been teaching a month-ly course for our first-year hematology-oncology fellows, which is loosely called, “Everything You Need to Know about Being a Medical Oncologist Except the Medicine,” in which we address psychosocial issues. One month we may talk about children’s issues, and another month we talk about sexuality, and another we talk about professional con-cerns, etc.

PBB: I think that this is a critical issue. I know that there are many medical schools now that provide integrative medical curricula. Keith, my husband and medical director of the Block Center for Integrative Cancer Treatment, is also director of the program on Integrative Medical Edu-cation at the University of Illinois, College of Medicine, where we cover these types of issues within a full integrative

context. I think part of the coursework has to be how do you efficiently screen and then make sure that you have the capacity to respond?

Research is emerging that shows that there are multiple physical effects that occur when chronic distress is unre-lieved, such as depression of the immune system, an increase

in proinflammatory cytokines, impairment of DNA repair. . . and I could go on. So, it is imperative that we intervene in the case of psychological distress. Health care professionals have to become more educated about these facts. In addition these professionals have to be educated about therapies and resources that can provide relief for their patients.

JH: I have always seen complementary therapies as an entry point for helping patients address psychosocial is-sues, and I think that it would be helpful if clinicians could be more informed not only about the issues at hand but also about complementary therapies, which serve as important options in a treatment plan. How do complementary thera-pies, such as massage, yoga, acupuncture, etc., help address the psychosocial needs of cancer survivors?

PBB: I have to say that I think it is really sad that such prac-tices, therapies, and services—along with dietary counseling, appropriate exercise planning, and systematic psychological therapies—are often seen as complementary or ancillary.

There is a whole body of research that supports the use of these therapies, including a recent study that came out which showed that yoga helps with sleep disturbance and acupunc-ture can help with pain and other aspects of health as well—and support groups can provide an ongoing sense of connec-tion with people who understand some of the issues.

There is often a sense of helplessness that occurs among cancer patients, and engaging in such therapies helps patients know there are things that they can do for themselves. When people have whole plans of care presented to them and access to other treatments, then they realize they do not have to feel helpless or alone.

KD: I agree that cancer survivors often feel out of control when they receive a diagnosis of cancer, and, when people en-gage in complementary therapies, such people may regain a locus of control. Yoga, exercise, and t’ai chi are not only cen-tering in terms of empowering somebody to feel emotionally centered and in control, but they are also a form of exercise that we now know is so important for survivors. Cancer may have been out of their control, but they can participate in therapies that strengthen the spirit, mind, and body as well.

“Research is emerging that shows that there are multiple physical effects that occur when chronic

distress is unrelieved.”

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Participating in complementary therapies can also strength-en a person’s social life. If they join a yoga group or a Strong Women, Strong Bones program, it will not only be a therapy that helps them outside of their medical treatment and helps them with recovery, but it is also a social focus, which can help decrease feelings of isolation.

Journaling may also enhance one’s ability to find meaning through writing and exploring one’s feelings and getting in touch with a sense of resilience that can surface after surviv-ing a cancer diagnosis. Reiki is another popular therapy among cancer survivors that may promote a sense of calm and connec-tion that is so needed in the midst of anxiety.

HHS: I think many survivors talk with social workers about their interest in complementary therapies, and, as Penny men-tioned, I bring it up to patients in terms of “have you thought about the other kinds of things you might do for yourself which could be helpful?”

When somebody talks to me about fatigue, I often recom-mend exercise. People may respond negatively commenting that they can barely get off the couch, but I am pretty con-vinced that even a short walk down the block and back may give somebody more energy, at least in the medium term, than a 15 minute nap would do.

Support groups are so important, because a person can re-ceive many different opinions and wisdom from people who have a shared experience. Certainly, I am one of the world’s biggest fans of the “right” support groups—meaning, I talk to patients about the questions they need to ask while they are exploring such groups. It is really important to find out who is facilitating the group, and there needs to be a trained facilitator who is an expert regarding their issues. Then, the other impor-tant question is who is participating in the group? A person who is newly diagnosed may not be so comfortable or find it helpful to be in a group that is made up mostly of people who have stage IV disease.

JH: What are your messages to other health care profes-sionals who care for cancer survivors about the need to ad-dress psychosocial issues and who need to refer people to helpful resources?

HHS: My message is that it is imperative to remember that people have lives—they do not just have cancer—and we have to pay attention to what is happening outside of our examina-tion rooms and outside of our hospitals, if we really want to treat whole persons and bring them back to wellness.

KD: It takes a team to deal with these issues, so I would say that it is important to refer patients to social workers and pro-fessionals in psycho-oncology and complementary therapists, all of whom can help address these needs.

PBB: The bottom line is that clinicians must have plans for treatment and for assessing psychosocial needs, which really should begin before active treatment. In addition, adjustments need to be made to meet the specific challenges of this transi-tion from active treatment back to nontreatment. A treatment plan needs to be a very health-oriented, integrative plan using diet, exercise, and psychosocial support.

JH: What are some of the ways that you see institutions and communities responding to these polls in a positive way?

KD: We are working very hard at University Hospitals, in Cleveland, Ohio, to put a survivorship program in place. This will include a survivorship clinic led by nurse–practitioners with social workers and patient navigators. Survivorship clin-ics really address care, moving forward after treatment, and ad-dress the psychosocial needs of survivors including issues of jobs and finance.

Many institutions participate and back programs, such as the Komen Race for the Cure, and support Komen sympo-siums. I think institutions are mindful that they have to be a part of not just the treatment phase of cancer survivors’ lives, but also during the multiple phases of their journeys. In addition, more institutions are getting involved in psy-chosocial research.

HHS: Yes, at Beth Israel Deaconess Medical Center in Bos-ton, we recently had our 17th Annual Celebration of Life, which is a day-long program of education, celebration, and gathering of community for our oncology patients, families, friends, care-givers, and we had slightly more than 1000 people in attendance, so it was a big success.

JH: What are some of the recommendations that each of you have for how to address the challenges that these polls present?

KD: What I come back to every time around these issues is that we need better health care legislation that will not bankrupt patients during treatment. The amount of devas-

tation that goes along with the financial burden of cancer is huge. On a daily basis I talk with people who have to make very, very tough choices. We have to advocate for a more fair system.

HHS: I think that is absolutely right, and, also, in this perfect world, where we have the perfect health care system, that also would mean that institutions and group practices have adequate resources to be responsive to expressed needs. I know we have had a lot of conversations within our professional group, AOSW, about the wish for general psychosocial screening for all newly diagnosed cancer patients. As Penny mentioned, there are many short instruments that take people 5 minutes to fill out. But the key is to have the appropriate number of staff members who can respond to the needs that are discovered.

PBB: Nationally and statewide, we are not addressing some of the approaches and lifestyle changes that are critical to changing someone’s whole biochemical terrain, giving some-

“We need better health care legislation that will not bankrupt

patients during treatment.”

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one a sense of empowerment against the potential for recur-rence, and I think that needs to be addressed. When we talk about health reform, we are talking about a critical issue of access to coverage and care, but we are not necessarily talking

about really good care. So, I believe that patients must continue demanding the kind of whole-person care that we are talking about here. When patients continue to demand an integra-tive and more comprehensive approach to their care, it will be implemented more consistently in institutions and practices.

JH: I think each of you makes excellent points. And early assessment, which each of you have talked about, is really considered a “gold standard” of care when addressing the whole person—is it not?

KD: Not only is early assessment critical, but let me reiter-ate what has already been stated, which is that survivors need ongoing assessments. The cancer experience is so dynamic, and what somebody feels at the beginning, the middle, and the end are all very different, and new needs arise along the journey. We need a structure in place that prevents people from slip-ping off the radar screen in terms of their needs.

We also have to empower our patients, and give them the message to find their voices and speak up so that they don’t fall through the cracks in the system. We need to tell patients to bring their issues back to us, because we do want to pay atten-tion. However, if they are not here on a routine basis, and they

are a few years out from treatment and have needs, then they need to speak up so that we can help them find the resources to address their needs.

JH: Thank you all for your expert insights into the signifi-cant challenge of responding fully to the psychosocial needs of cancer survivors. n

References

1. Wolff SN, Nichols C, Ulman D, et al. Survivorship: An unmet need of the patient with cancer—implications of a survey of the Lance Armstrong Foundation (LAF). [In: ASCO Annual Meeting Proceedings]. J Clin Oncol 2005;23:(16suppl):6032.2. Committee on Cancer Survivorship: Improving Care and Quality of Life, Institute of Medicine and National Research Council, authors; Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: Institute of Medicine, 2006.3. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC, 2007. Online document at: www.iom.edu/Reports/2007/Cancer-Care-for-the-Whole-Patient-Meeting-Psychosocial-Health-Needs.aspx Accessed June 23, 2010.

Jane Hart, MD, is a clinical instructor in internal medicine and chair of the Integrative Medicine Committee at Case Western Reserve University School of Medicine, in Cleveland, Ohio. Penny B. Block, PhD, is the executive direc-tor of the Block Center for Integrative Cancer Treatment, and the executive director of the Institute for Integrative Cancer Care Research & Education, both in Evanston, Illinois. Kim Day, MSSA, LISW, OSW-C, is a clinical social worker at the University Hospitals Ireland Cancer Center, in Cleveland, Ohio. Hester Hill Schnipper, LICSW, OSW-C, is the program manager of Oncology Social Work at Beth Israel Deaconess Medical Center, and an adjunct professor at the Simmons College School of Social Work, both in Boston, Massachusetts.

To order reprints of this article, e-mail Karen Ballen at: [email protected] or call (914) 740-2100.

“We are not addressing some of the approaches and lifestyle changes that

are critical to changing someone’s whole biochemical terrain.”

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roundtable discussion: addressing the psychosocial needs of cancer survivors

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