Addressing Patients' Psychosocial Needs & Concerns

Clinicians who treat cancer patients must necessarily focus on medical issues when diagnosing and treating their patients' illness. But by concentrating solely on medical strategies, oncologists may miss opportunities to address patients' deeper concerns. Diane Blum, MSW, Executive Director of Cancer Care, notes, “Cancer creates an emotional crisis for people. No matter how good your coping is, no matter how good your support system is, it does create a crisis.” Alan B. Astrow, MD, formerly Chief of Clinical Oncology at St. Vincent's Hospital-Manhattan and the new Director of the Division of Hematology and Oncology at Maimonides Medical Center in Brooklyn, added a further characterization of cancer's life-changing potential: “Yes, cancer creates an emotional crisis. The diagnosis of cancer is obviously deeply disturbing to people. But I would go even further—for many people, it has the potential to create what some would term a spiritual crisis, because all of sudden, the person's life is called into question.” Are oncologists doing enough to help patients find the sort of support they need to negotiate this emotionally charged journey? Although progress has been made in the last two decades, and patients' needs have become more prominent through the work of advocacy groups, clinicians could still do better in addressing their patients' emotional concerns, agreed social workers and clinicians interviewed for this article. “The psychosocial parts of dealing with cancer, the emotional, social, and financial impact, really do need to be recognized—and they aren't always,” Ms. Blum said. Dr. Astrow acknowledged that addressing patients' psychosocial concerns might not happen as much as it ought to. “I do not think that is because doctors are thoughtless or uncaring,” he emphasized. These are tough issues for all of us. Physicians and especially oncologists are witnesses to complex emotional upheavals and existential crises. We have relatively little formal training in how to address our patients' concerns in those realms. “Oncologists, as part of their professional skill set, need to acquire a level of comfort in facing powerful emotions and troubling doubts—our patients' as well as our own.” Listening for Clues Medical and surgical oncologists have not been trained to hear the psychosocial subtext of cancer patients' communications, noted Les Gallo-Silver, MSW, Director of Clinical Programs for Cancer Care. These indicators may often be subtle, and therefore misperceived and addressed at “face value.” For example, after hearing a treatment plan for post-mastectomy radiation, a patient or caregiver may ask, “So, radiation is every single day, five days a week?” The answer being sought to this seemingly straightforward question, Mr. Gallo-Silver said, may relate to the medical issues (in which case, the answer is a simple “yes”). But the patient may also be communicating her dilemma of dealing with the pressure of arranging daily transportation, sadness of managing childcare, and anxiety about work schedules.Figure: Diane Blum, MSW: “Cancer creates an emotional crisis for people. No matter how good your coping is, no matter how good your support system is, it does create a crisis….The psychosocial parts of dealing with cancer, the emotional, social, and financial impact, really do need to be recognized—and they aren't always.”Other clues that the patient or family member is anxious or upset: asking the same question over and over again, calling the office a great deal about non-emergent issues, or calling the service in the early morning on weekends. Repeating a question demonstrates that the patient is having difficulty integrating information because of anxiety and fear. “At times, patients are hoping the oncologist's answer will change to one that they can accept and hear,” Mr. Gallo-Silver said. “Calling the oncologist with non-emergent issues is also an indication of anxiety, but it may also indicate that family members and friends are not giving the patient sufficient emotional support. So, in this case, the patient feels comfortable only with the oncologist, and the frequent calls are a request for more contact and more comfort.” Finally, early morning calls can signal disrupted sleep patterns—a classic sign of depression. If the physician suspects that emotional issues are behind such actions, he or she can turn to a trained colleague for assistance to help discern and address the patient's or family's concerns. In addition, there are relatively simple communication techniques that clinicians themselves can use. Ruth Oratz, MD: “I think listening is the number one issue, and we have to respond to what we hear. Even if a patient's fears seem irrational to me, or if I feel that her fear is out of proportion to the reality of the threat, I need to validate that and explore with her where that comes from. The other tool when we're giving bad or difficult news is to have a plan for dealing with the problem.” Ms. Blum recalled that she was influenced by psychiatrist Avery Weisman, MD, formerly of Massachusetts General (a pioneer in psychosocial oncology who was awarded the third Holland Distinguished Leadership Award earlier this year at the American Psychosocial Oncology Society's Annual Conference), who advised that everyone who works with cancer patients should begin by asking, “What's your primary concern at the moment?” In the case of the person asking about daily radiation treatments, the clinician might find that travel logistics, expenses, and lost work time were more worrisome than side effects of treatment. Referral to a cancer patient support organization might then be appropriate. Cancer as Crisis Floyd V. Allen, LMSW, coordinator of Cancer Care's Men's Program and Director of the Individual Cancer Assistance Network (ICAN) grants project funded by the Bristol-Myers Squibb Foundation, trains fellow social workers to understand and address cancer's emotional impact. “No matter how small or routine a diagnosis or treatment might have been, it's going to have a psychological and emotional impact that is far-reaching,” he said. He recalled one participant from a prostate cancer support group whose cancer was diagnosed in the early stages and was medically treatable. “But it didn't matter emotionally [to him],” Mr. Allen said. “Emotionally, the message was: cancer equals death. So, depending on a person's financial, professional, social, or family situation, they will react accordingly, with some amount of angst, that their time is limited.” In addition, Mr. Allen said, patients may experience several crisis points throughout the illness trajectory. The first, of course, is the initial diagnosis. Other crisis points may arise in association with severe treatment side effects, during a recurrence, at the end of life, and—surprisingly—at the completion of treatment. The latter crisis point can surprise clinicians, Mr. Allen said. While the physician perceives remission and completion of treatment as cause for celebration, the person with cancer may experience increased vulnerability. Patients often experience their regular visits with the treatment team as a kind of protection against the cancer recurring. “At the completion of treatment, patients might also experience a resurgence of intimacy and relationship issues that might have been on hold because they were in treatment, and now they are anxious about all of these things, and everyone expects them to be normal.” Even social workers not trained in treating cancer patients may be surprised to learn that crises can be ongoing. This is one of the key themes in the ICAN program, “Understanding Cancer: The Social Worker's Role,” designed specifically to enhance social workers' skills and to better disseminate those skills across the country (see box).Figure: Alan B. Astrow, MD: “Oncologists, as part of their professional skill set, need to acquire a level of comfort in facing powerful emotions and troubling doubts—our patients' as well as our own.”Assessing Support Networks Taking a medical history should include a psychosocial assessment, noted Ruth Oratz, MD, a breast cancer specialist and attending physician at Rocky Mountain Cancer Center in Denver. It's very important for the clinician to listen to the patient and understand who she is. What is her life about? What are her support systems and what support networks does she already have in place?Figure: Floyd V. Allen, LMSW: “No matter how small or routine a diagnosis or treatment might have been, it's going to have a psychological and emotional impact that is far-reaching.”For instance, is she a single mom who is working and lives in a walk-up apartment in an isolated urban setting? Or is she an older widowed woman living with her children and with an extended family around her? “When I meet a patient for the first time who is newly diagnosed with cancer, I ask her what she understands about her illness,” Dr. Oratz continued. “Very often, I'll find out what it is that she's most concerned about. Everyone has different values, and you need to listen to your patient and hear what is important to her.” In Dr. Oratz's experience, most people process the cancer diagnosis “remarkably well,” and are able to marshal the support they need to deal with treatment issues. In addition to friends and family, social support networks may include a patient's volunteer organizations, church groups or other community groups. Dr. Oratz encourages her patients to find support groups appropriate to their particular situation. Occasionally, a patient with significant depression or a prior history of psychiatric illness will warrant additional medical consultation. “I am reluctant to prescribe anti-depressants and anti-anxiety drugs in my own practice, because I feel that if a patient is so symptomatic that she requires medication, then she deserves a consultation with an expert in the field to determine what the right treatment should be,” Dr. Oratz said. When the News Is Bad Disclosing bad news—whether in the form of the initial diagnosis or of unfavorable test results during treatment—takes a toll on the physician as well as the patient, Dr. Astrow noted. Having a plan for the discussion is key, according to researchers who have developed protocols for delivering bad news such as the SPIKES program developed by a team led by Walter F. Baile, MD, of the University of Texas M. D. Anderson Cancer Center, and Robert Buckman, MD, PhD, of the Toronto-Sunnybrook Regional Cancer Centre (see box). Many oncologists develop their own workable techniques through trial and error, Dr. Astrow continued. The first thing, when you're giving a patient emotionally charged information, is to have conscious awareness of the significance of the information that you are conveying. These are not just test results. They may carry life-and-death import for patients. Each may be thinking, ‘what is going to happen to me?’ “Then, the clinician must resist the impulse to immediately offer reassurance,” Dr. Astrow said. “While it is the physician's job to try to ‘fix the problem,’ it is often helpful first to acknowledge the patient's emotions and to follow with an empathic remark. The patient is more likely to see the physician as a therapeutic ally if the physician first makes that emotional connection.” “I think listening is the number one issue,” Dr. Oratz concurred, and we have to respond to what we hear. The first part of that response is to acknowledge what the patient has said, and to validate her feelings. “Even if her fears seem irrational to me, or if I feel that her fear is out of proportion to the reality of the threat, I need to validate that and then explore with her where that comes from. The other tool when we're giving bad or difficult news is to have a plan for dealing with the problem.” Dr. Oratz also tries to deliver bad news in person, not over the telephone, because I cannot respond to the patient. She may need a lot of interaction from me if I'm giving her bad news. “She may even need me to give her a hug. I know that some people don't believe in therapeutic touch, but I do—it's therapeutic for the doctor and the patient.” Dr. Oratz said she also plans enough time for a conversation with the patient and whomever the patient wants to bring to the meeting, and encourages patients to take notes and/or to tape-record the visit. “I think that even when the news is ‘bad,’ and the options unfortunately limited, there are things that you can do as a doctor that have meaning for the patient,” Dr. Astrow said. You cannot play every role: you're not the friend, the spouse, the colleague, the spiritual counselor. But because you are a knowledgeable and trustworthy guide about illness, and because you have particular knowledge about your own patient's course, you have a unique relationship with the patient. “As physician,” Dr. Astrow said, you have a special role: to listen to the patient, to take a genuine interest in who that patient is, what's important to that patient, and to apply your craft in such a way that the patient can sense your concern for her as an individual.Figure: Les Gallo-Silver, MSW: “Medical and surgical oncologists have not been trained to hear the psychosocial subtext of cancer patients' communications….Calling the oncologist with non-emergent issues could indicate that family members and friends are not giving the patient sufficient emotional support. So, in this case, the patient feels comfortable only with the oncologist, and the frequent calls are a request for more contact and more comfort.”“Most patients understand that their doctors are busy,” she noted. It is surprising sometimes how small gestures from a physician can carry tremendous import for a patient. “For the physician, I think that it's less a matter of time, than it is of finding the emotional energy and sometimes even the spiritual discipline to acknowledge a patient's emotional needs. When the physician is able to seize the opportunity to act with genuine kindness and concern, there is the potential to transform the way in which the patient views the entire situation.” Disseminating Oncology Social Work Skills Most Americans have now been touched, directly or indirectly, by the diagnosis of cancer. Access to colleagues with skills specific to oncology issues may be a given at comprehensive cancer centers, but in less populated areas, oncology social workers or psychologists conversant with the specific issues may be in short supply. Cancer Care began a program about a year ago in partnership with the National Association of Social Workers to address this gap. Funded by grants from the Individual Cancer Assistance Network (ICAN) program of the Bristol-Myers Squibb Foundation, the Web-based continuing education course, “Understanding Cancer: The Social Worker's Role,” has now been taken by some 10,000 social workers worldwide. An additional phase of training began in March, with a six-hour in-person training workshop held in Utah; and subsequent workshops were held in San Francisco and Atlantic City. Coming up in future months are sessions in Nashville in June; Shepardstown, West Virginia in July; and St. Paul, Minnesota in September. The goal, according to Cancer Care Executive Director Diane Blum, MSW, and Floyd V. Allen, LMSW, the Coordinator of Cancer Care's Men's Program and ICAN's Director, is to give social workers the assessment tools and skills they need to help cancer patients at any point in the continuum of treatment and survival. Additional information on online education courses and workshops is available on the National Association of Social Workers' Web site: www.naswdc.org Support for Cancer Patients: A Partial List Referral to the following Web sites can be helpful for patients and families: American Cancer Society — www.cancer.org CancerCare—www.cancercare.org Cancer and Careers—www.cancerandcareers.org Gilda's Club—www.gildasclub.org Susan G. Komen Foundation—www.komen.org People Living with Cancer—www.plwc.org Sharsheret—www.sharsheret.org Susan Love's Web site—www.susanlovemd.org The Wellness Community—www.thewellnesscommunity.org Young Survival Coalition—www.youngsurvival.org The SPIKES Plan for Giving Bad News For the difficult times when clinicians have to deliver bad news, having a plan for the discussion is key, note researchers who have developed protocols such as the six-step SPIKES plan created by a team led by Walter F. Baile, MD, of the University of Texas M. D. Anderson Cancer Center, and Robert Buckman, MD, PhD, of the Toronto-Sunnybrook Regional Cancer Centre. SPIKES stands for: Setting up the interview. Assessing the patient's Perception. Obtaining the patient's Invitation. Giving Knowledge and information to the patient. Addressing the patient's Emotions with empathic responses. Strategy and summary. The full protocol was originally published in 2000 in The Oncologist (2000;5:302-311).

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