Providing a Lifeline

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When Cancer Affects Quality of Life, Help Is Available

From Turning Point 2019

By Saul Wisnia

Social workers at Dana-Farber Cancer Institute

On a cool spring day, a patient we'll call Claudia arrived at Dana-Farber's Susan F. Smith Center for Women's Cancers for blood tests and chemo, but there was more on her mind than the weather.

Her biweekly appointments, while essential to her care, were wreaking havoc on her life. She had recently been forced to leave her job; it offered no sick days or vacation time. Facing the same restrictions at work, and serving as her primary caregiver, her husband had to quit, too, and the double loss of income led to an eviction notice. The couple couldn't afford an apartment near the school their two children attended, and the waiting list for subsidized housing was months long.

As she followed the clinic assistant to get her vital signs checked, Claudia wondered what the future held for her and her family.

There are many challenges patients must face in addition to – or resulting from – their breast or gynecological cancer. Whether it is financial constraints, relationship issues, language barriers, or concerns over how to navigate the dating world after diagnosis, the center's experienced Social Work staff is there to help ensure that all parts of a patient's well-being are considered. No matter their age, background, or type of cancer, women can find the help they need to maintain a satisfying life.

Different Women, Different Needs

"The burden of cancer is felt differently by each woman," says Nancy Borstelmann, PhD, MPH, senior director of social work at Dana-Farber. "For instance, our clinical work and research shows us that younger women, on average, have higher levels of stress, anxiety, and depression than someone older who has weathered more storms in his or her life or relationships. Some women are more open to talking about the impact of diagnosis, while others have barriers to their care that make reaching them more difficult. We want to be there for all of them, and for their caregivers too."

Nancy Borstelmann, PhD, MPH

Borstelmann, who has more than 20 years of experience at Dana-Farber, says that the growing body of research into issues faced by female patients has enabled clinicians to offer more specialized guidance and treatment. One example is the Young and Strong Program, in which women with breast cancer under age 45 receive comprehensive care, support, and education tailored to this age group: fertility concerns, questions around school and careers, and the challenges of dating, intimacy, and raising children while living with cancer. Clinical social workers are a key part of the Young and Strong team, helping patients work through their concerns and sometimes complex emotions.

"Young single women may be worried about managing the dating world, and how and when they should talk about their illness with potential partners, at the same time they are adjusting to changes in their bodies," says Julie Salinger, LICSW, a clinical social worker at Dana-Farber for nearly a decade. "During and after cancer treatment, issues with intimacy and sexuality are common. Early menopause may occur, causing symptoms which some patients are not comfortable discussing with their medical team. Many feel there is no solution. We make sure to ask patients about all of these issues, to normalize their experience, urge them to seek further help, and to provide valuable, helpful information that can alleviate symptoms."

Those patients with children on their mind, explains Salinger, face a different set of concerns. "If women have children, we provide information about how best to talk to children of differing ages, even rehearsing future conversations with them," Salinger says. "If they want to have children, or want to have more of them, we can help them explore the possibilities – and process grief if this is not possible."

Barriers in Any Language

The well-meaning parents of 20- and 30-something cancer patients are a less obvious challenge. They are often more than ready to let their daughters move back home, or to care for grandchildren while mom is undergoing treatment. These acts of kindness, social workers have learned, can come with an emotional cost – a feeling of displacement or regression. Such emotions can also hamper older female patients whose adult children step in as their caregivers. After decades of driving, cooking, and taking care of things themselves, giving up these responsibilities can feel like a loss of independence.

Rachel Freedman, MD, MPH, a breast cancer specialist in the Susan F. Smith Center, has studied issues facing older patients. Thirty percent of breast cancer patients in the United States are now age 70 or older and are more likely to have other health conditions that can complicate their breast cancer treatment. They also are often dealing with a shrinking support network and logistics around getting to and from appointments, as well as financial considerations. As longer-term survivorship for ovarian cancer and other gynecological cancers increases, so too does the need to offer patients of all ages support for issues outside their direct care.

"We are deeply committed to not only improving the length of one's life by treating their cancer, but we are also completely focused on the quality of life that women with cancer have," says Dr. Freedman. "Whether it is side effects from treatment, both short- or long-term, better support, or emotional health, we are driven to make our treatments as tolerable as possible while providing as much benefit as we can."

For some patients, language can also be a barrier. Clinical social worker Rachel Allende, LICSW, specializes in working with limited English-proficiency patients, of which Spanish speakers are the largest group. She collaborates closely with interpreters and encourages patients to join Círculo de Vida, a monthly support group for Dana-Farber's Spanish-speaking patients. Its membership has become a source of support for one another.

No matter what language they speak, patients can face financial and related challenges that are further deterrents to care. With housing in the Boston area becoming increasingly expensive, Allende and other social workers are seeing more patients like Claudia who are forced to leave their jobs, go without meals, or even become homeless while dealing with cancer. Because people are not always forthcoming about such issues, especially if language is a barrier, Allende strives to ask the right questions.

"We all do our best to meet people where they are at, and as colleagues we are always seeking out each other for help depending on who may have the best resources," says Allende. "Whether it is housing security, food security, legal issues, or people who need shelter, the key is knowing who to contact for a patient's other concerns beyond cancer."

Addressing these concerns is a fundamental intervention to help manage distress and support quality patient care. Traditionally, oncologists, nurse practitioners, and nurses have determined which patients they feel would best benefit from a social work referral. But a new group is now also helping: patients themselves.

On their fourth medical oncology "encounter" – which usually occurs in their second or third visit – breast oncology patients are now asked to complete a brief survey known as the Illness Impact Questionnaire. This tool includes a measure of an individual's level of anxiety and depression, which helps alert social workers as to which patients are experiencing higher levels of distress and may be most in need of counseling.

"We ask to what extent they are worried about the impact of their cancer on common areas of concern: their children, caregivers, spirituality, and their sexual functioning and emotional well-being," says Borstelmann. "There are also questions about practical barriers to care, like transportation, and if they score at a level of moderate distress or concern, the results of the screening advance to the patient's provider for review. In addition, a social worker will make a follow-up call."

Social work referrals have risen since the distress scale screenings first started last year. The hope, says Borstelmann, is that even if their score does not warrant a referral, the act of answering the questionnaire may raise patients' awareness of the help available, which may lead patients to seek help.

Another highly effective resource for helping patients connect with social work services involves individuals who have faced similar challenges. The Susan F. Smith Center offers the SoulMates program, which matches breast cancer patients with former patients who have been through a similar experience.

These peer mentors are trained in topics such as listening, problem-solving, and confidentiality. Through one-on-one conversations, they provide emotional support and help relieve fears. Speaking of her SoulMates mentor, one patient said, "I could share my deepest darkest thoughts and fears – and I knew that she would understand."

A patient's spouse, partner, parents, and children may also feel anxious, and social workers provide these and other caregivers with their own support as needed – along with helping to identify options for community-based support.

"We respect how difficult it is for caregivers of patients to make time to talk to someone when they are already dealing with so many responsibilities outside their normal life," says Salinger. "For efficiency's sake, we may assign a separate social worker to a partner and arrange an appointment to coincide with the patient's treatment schedule."

In the end, it is all about making a patient's quality of life better. Working with Claudia, the patient who found herself evicted during treatment, Allende helped the family find space in a shelter with a semi-private room, critical for a woman who is immunocompromised. Then, over time, she helped them access an apartment and get their kids into a new school, all while providing emotional support to the entire family.

Claudia can now focus her attention to treating her cancer, knowing that as additional challenges arise, she has a team at the Susan F. Smith Center to help her – even when she is not within its walls.

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