Many patients will tell you that battling cancer is a full-time job with little to no “down time.” This can especially be true for metastatic breast cancer patients who must cope daily with grueling treatment schedules and psychological exhaustion.
To give patients an opportunity to temporarily leave behind their treatment regimens and reflect on their personal priorities, Saint Luke’s Hospital Koontz Center for Advanced Breast Cancer (the Koontz Center) holds biannual psychosocial retreats for women with metastatic breast cancer (MBC) and their partners/supporters. The three-day retreat program was inspired by A Journey of Courage and Hope for Women and Women Who Support Them, a retreat held at Johns Hopkins Medicine for women with MBC and their female caregivers (e.g., daughters, mothers, sisters, friends). Similarly, the retreats at the Koontz Center were developed to support the unique needs of patients with MBC and their spouses/partners or primary caregivers/supporters.
Retreat participants and their partners are guided by a multidisciplinary oncology team that facilitates therapeutic approaches to moving through disease progression and end of life. During each retreat, approximately ten patients and their partners join semi-structured group activities that address the psychological, relational, spiritual, and fluctuating challenges of cancer diagnosis and treatment. The retreat is an opportunity to carve out personal time and share experiences removed from everyday life to better foster intimacy, communication, and social connection.
In 2018, the Koontz Center for Advanced Breast Cancer was recognized by ACCC for effectively integrating six guiding principles (enumerated below) for treating patients with MBC. ACCC recognizes the importance of understanding and addressing the unique challenges faced by patients with metastatic breast cancer. The six guiding principles developed as part of ACCC’s MBC Education Program provide a framework that cancer programs can use to assess services offered to this patient population and explore a range of models for improving care for MBC patients.
The retreats hosted by the Koontz Center incorporate interventions and activities that effectively support all six principles:
PRINCIPLE 1: Empower patients and their partners by providing knowledge and educational resources about the diagnosis. An entire group session is devoted to information about MBC.
- The Koontz Center retreat is structured around an initial group information session in which a clinical psychologist presents an hour-long summary of current research related to the medical, psychological, and social impact of metastatic disease.
- This information creates a shared understanding for guiding difficult conversations that relate to quality of life, disease progression, and meaningful coping strategies.
PRINCIPLE 2: Reframe the conversation through guided group discussions on coping and preparing for disease progression, emotional response, and end of life.
- Group conversations facilitate each retreat participant’s process of rediscovering their disease in ways that empower them to imagine and create therapeutic approaches to moving through MBC.
- The final day of the retreat focuses on the spiritual aspects of living with MBC. Patients and their partners share experiences or struggles with hope, finding meaning in struggle, and allowing difficulty to strengthen their relationships with others.
- Legacy planning activities create an avenue for shifting awareness toward conscious and value-driven end-of-life choices. These exercises empower patients and their partners to make plans and decisions based on their personal values.
- The “Beyond the C Prom” provides an opportunity for participants to celebrate life and one another and make a special memory. Dancing, music, a photo booth, and games help prioritize the joy and fun possible even when living with the extreme challenges of MBC.
PRINCIPLE 3: Reduce patient isolationthrough connection with others going through similar experiences.
- During the retreat, participants stay together in a large facility with private suites for each couple. The group lives and works together, sharing meals and leisure time, including formal and informal moments of vulnerability.
- The patient-only support group provides a space for women with MBC to openly discuss their challenges and experiences with others who can uniquely relate. Participants describe feeling relief, peace, and gratitude for the openness and warmth they experience with shared connections.
- Partners meet separately to explore and talk about their role in MBC. Many have commented on not recognizing their own need for support until sharing their experiences with other partners.
- As organic relationships develop throughout the weekend, participants exchange contact information, create social media groups, and plan future gatherings to stay connected with their retreat cohort. These relationships carry on beyond the retreat weekend.
PRINCIPLE 4: Offer logistical supportby providing a no-cost therapeutic and educational opportunity to learn new ways to improve quality of life.
- Retreat activities provide no-cost supportive experiences, including yoga, massage, meditative labyrinth walking, and legacy-building activities.
- The retreat allows for time away from medical appointments and treatments as well as the demands of work, household, and family in order to assist participants in focusing on their needs as individuals living with metastatic disease.
- Information and resources are provided to support known deficits in MBC quality of life, including symptom management, emotional support, and community resources.
- Participants are taught about available resources at the Koontz Center, including social work support, counseling, massage, yoga, acupuncture, and a monthly support group.
PRINCIPLE 5: Connect patients with support in the communityby sharing resources available to people with MBC.
- Retreat participants receive information about local, regional, and national resources that support patients with MBC. They also share their experience and knowledge of support services they have received from varying resources and organizations.
- Retreat staff provide psychosocial education that emphasizes the benefits of receiving supportive services throughout treatment.
- End-of-life discussions teach patients about different options for ongoing care and hospice.
PRINCIPLE 6: Collaborate in the interest of patients. During the retreat, oncology staff members from the Koontz Center’s Psychology, Social Work, Nursing, and Chaplaincy Departments collaborate to provide multidisciplinary services to support retreat participants.
- Team training directed by a clinical psychologist teaches staff members evidence-based strategies for facilitating group discussions, assisting participants with painful emotions, and creating an environment that fosters intimacy and connection.
- During the retreat, staff members meet twice daily to determine the best ways to tailor interventions to the needs of specific groups or individuals.
- Staff conduct outcome research to better understand how the retreat influences patients and their partners individually and in relation to one another.
- Staff conduct analysis after each retreat to identify opportunities for continuous quality improvement based on participant and staff feedback.
Discover more resources you can use to educate cancer care teams and support patients with metastatic breast cancer in the ACCC MBC Project resource library.
Janie Metsker, RN, BSN, CN-BN, is the Clinical Coordinator for Saint Luke’s Hospital Koontz Center for Advanced Breast Cancer. She navigates patients with metastatic breast cancer throughout the continuum of care. She is also the coordinator of the Koontz Center’s two annual A Journey of Courage and Hope retreats.
