Delivering psychosocial support to every patient at pivotal points in their care can prove challenging due to several practical factors facing cancer programs across the country. As institutions strive to meet more demanding standards, as well as changes in healthcare reimbursement and financial constraints, program staffs are asked to handle increasing responsibilities. Assessing and addressing psychosocial needs can fall to workers who may not feel they have the time or skill to handle this domain of care. Further, the institution may not have processes or procedures in place to ensure consistent, timely, and appropriate psychosocial care. Nurse navigators, patient navigators, and social workers can collaborate to fill vital roles in direct patient psychosocial care and in developing processes and procedures that improve delivery of that care.
Staffing for navigators, social workers, and other support services varies among institutions in the United States. In this article, we will show a range of examples of how psychosocial care is delivered in cancer programs with differing profiles in terms of staffing and use of technology. AONN+ members who are involved in starting or improving psychosocial services may find ideas or models here that they can incorporate as they develop and expand support programs for their patients.
Barbara R. McHale, RN, BS, OCN, CBCN, is a nurse navigator working at St. Mary’s Cancer Treatment Center and Samaritan Hospital Radiation Oncology, St. Peter’s Health Partners (SPHP), in Troy, NY.
Description of Facility: St. Mary’s Cancer Treatment Center and Samaritan Hospital Radiation Oncology, SPHP, is a community-based cancer center in Upstate New York. It was created by a merger of St. Peter’s Hospital (teaching hospital), 3 other community hospitals, and a rehabilitation hospital. St. Mary’s Cancer Treatment Center houses medical oncology, and radiation oncology is housed at Samaritan Hospital. The radiation department will be on-site at St. Mary’s Hospital in 2018. The cancer center also provides in-house referrals to palliative care, hospice care, Eddy Visiting Nurse Association, geriatric care, and senior living facilities.
Types of Cancer Treated: The center has 1 multisite navigator who works directly with breast, colorectal, head and neck, and lung cancer patients. This navigator also assists patients with pancreatic cancer and lymphoma, and other patients who need assistance or have barriers to care.
Staffing: The system has 1 nurse navigator at St. Mary’s Cancer Center and 2 navigators at St. Peter’s Hospital. St. Mary’s Cancer Center has 1 master of social work (MSW) intern, and the hospital is tracking her utilization by patients to justify hiring a social worker. Samaritan Hospital has 2 social workers in their outpatient mental health department who are available for counseling and a psychiatrist within the mental health department who is available to consult with cancer patients. The oncology RN and the nurse navigator can refer patients to various services: nutrition, social work, and counseling.
Distress Screening: When patients come to St. Mary’s Cancer Center or Radiation Oncology for an initial consult, they receive a new patient packet that contains the National Comprehensive Cancer Network (NCCN) Distress Tool. The clinic RN reviews the completed tool and refers any patient with a score of 4 or higher to the social worker, the nurse navigator, the American Cancer Society (ACS) patient navigator, to nutrition, or to counseling. Concerns for patients with a score under 4 are managed by the physician and/or the clinic nurse.
Once a patient has documented specific issues or barriers using the Distress Tool, a further discussion into issues is done by the navigator and/or the MSW intern. They utilize a weekly huddle where the upcoming week of patient appointments are reviewed. At this meeting, where all staff are present, they also discuss inpatients, patients currently being seen with issues/concerns, and upcoming new patients. The discussion covers medical, nutritional, social/counseling, financial, work/disability concerns, clinical trial recommendations, treatment plan of care, and recommendations regarding palliative and/or hospice referrals.
The nurse navigator reviews the Distress Tool with the patients so she can also address issues and barriers. She works closely with the social workers, counselors, and insurance company case managers to make sure that patients receive needed care. The cancer center does not have an electronic medical record (EMR) in the clinic yet, so Excel spreadsheets are used to track data, and Meditech was adapted to include nurse navigation documentation.
Patients should be rescreened if there is disease progression or a change in the treatment plan. The cancer center is working on standardizing the rescreen process to more consistently meet the needs of these patients. Once patients complete their treatment, they receive the tool again at a follow-up visit with their oncologist. The completed tool is used to address issues and concerns by the nurse practitioner at the survivorship visit when the patient receives a survivorship care plan.
Patient Feedback: Patient satisfaction surveys have shown that patients are highly satisfied with the care they receive at the cancer center. All surveys have been 4.5 to 5, with 5 being the best. Program staff feel this is due to follow-through, direct contact, and patient adherence to the treatment plan enabled by removal of barriers, quality of life, and coverage of medical costs through grants. Another strength of the cancer program is the close collaboration and care coordination between the surgeons, primary care physicians, medical oncologists, and radiation oncologists.
Integrative Wellness: The cancer program firmly believes that all patients deserve access to integrative health therapies, and that cost should not be a deterrent. Services are available at no cost to the patient through a funded program, “Visions of Strength.” The cancer center offers healing touch, massage, yoga, acupuncture (in community by referral), and exercise programs.
Rehabilitation: We work closely with a lymphedema specialist within our system who does baseline assessments and education for our surgical breast patients. The specialist also works with our head and neck cancer patients.
Other Support Resources: The new center has a boutique where patients can purchase supplies, scarves, and hair coverings. A local support organization, 4 my sisters, have a designated area at the cancer center where they provide wigs and makeup to patients. The cost of these services, if not covered by insurance, is underwritten by the Visions of Strength program. At the center, patients can research information at a library, which is staffed by ACS and Hope Club volunteers. SPHP initially used lay navigators from the ACS who came to the hospital twice a week. These navigators were social work students pursuing their MSW. All patients in the infusion area have access to iPads, which are preloaded with educational material, chemotherapy class information, and Netflix access.
As a community hospital–based system, it’s important for the navigators to know available resources within the hospital and the community, and to utilize them. Budgets are tight, and it’s necessary to gather data to prove the efficacy of positions. Staff refer patients to a program, “To Life,” which provides breast cancer education and support, and health and wellness workshops; and the Albany Law Health Clinic, which offers free legal assistance to people diagnosed with HIV/AIDS, cancer, etc. Working collaboratively with other organizations helped the center and their patients receive needed services.
Marian E. Gilmore, RN, OCN, is a nurse navigator at the Dana-Farber/Brigham and Women’s Cancer Center in clinical affiliation with South Shore Hospital in South Weymouth, MA.
Description of Facility: The cancer center provides residents south of Boston with the highest level of cancer care in the region. Experts from Dana-Farber Cancer Institute, Brigham and Women’s Hospital, and South Shore Hospital collaborate to offer many of the advanced treatments currently offered at Dana-Farber/Brigham and Women’s Cancer Center in Boston, including clinical trials exploring new therapies to patients in their local community. For patients requiring care from physicians in specific disease areas, South Shore Hospital can provide a smooth transition to Dana-Farber/Brigham and Women’s Cancer Center in Boston.
Types of Cancer Treated: The nurse navigator works in the Multispecialty Clinic with 12 surgeons who rotate through on a weekly basis in surgical oncology. The multidisciplinary surgical oncology program, provided by South Shore Hospital and Brigham and Women’s Hospital, offers care from specialists in gastrointestinal, genitourinary, gynecologic, plastic, and thoracic surgery; neurosurgery; and otolaryngology. The cancer center has a separate Breast Clinic that has 2 breast nurse navigators on staff addressing needs of breast cancer patients.
Staffing: The Multispecialty Clinic offers services with social workers, nutritionists, chaplains, resource specialists, as well as a psychiatrist. South Shore Hospital is located across the street and provides access to financial counselors.
Distress Screening: The oncology nurse navigator utilizes the NCCN Distress Tool on initial consult in the Multispecialty Clinic. Regardless of what the patients’ distress score is, the social worker is available to them at all times. Patients are told that scores from 1 to 4 indicate an appropriate level of stress, 5 to 9 moderate stress, and a score of 10 indicates a need to see a social worker before they leave the building. Even those who score 0, and may be in denial, are given the option to see the social worker as well. If the patient scores greater than a 5 and declines social worker support, the nurse navigator follows up within 30 days for re-evaluation and to again offer supportive services.
Once the social worker assesses the patient and determines that the patient needs further counseling, she will refer him/her to the psychiatrist, who is at the clinic 1 day a week. The nurse navigator and social workers meet with the psychiatrist on an ongoing basis to share information regarding patient referrals. Many times the patient is comfortable with the social worker and continues meeting with her.
The team has weekly huddles (prostate-GU/lung/GI) during which all new and ongoing patients are discussed by the surgeon, medical oncologist, radiation oncologist, nutritionist, social worker, chaplain, nurse navigator, and research nurse. All issues are discussed in an open format, and further referrals may be made at this point. The most common barriers that the nurse navigator sees are anxiety about a diagnosis and how to discuss this openly with their families. The Distress Tool is also utilized at any pivotal point in treatment, for example with a recurrence, change in treatment plan, etc. Analysis of the distress screen results shows that there has been a decrease in self-reported stress levels after utilizing services available to them.
Integrative Health: The clinic offers Reiki, acupuncture, massage, and exercise programs, and also offers yoga classes to all patients diagnosed with cancer. Most of these programs request a small fee, and financial assistance is available. Exercise programs are offered at South Shore Hospital (an affiliate facility), and the center also refers patients to the LIVESTRONG cancer survivor exercise programs at local YMCAs. The YMCA charges a minimal fee and offers a free 3-month membership. Massage therapy is provided at $20/hour per treatment. Patients are eligible for this service once a month for the rest of their life. (One patient who has been cancer free for over 10 years still comes once a month!)
Spiritual Support: The hospital has a chaplaincy department. Chaplains follow patients treated in-patient and out-patient at the cancer center. The nondenominational chaplain visits patients early in their treatment when they undergo surgery and maintains contact if the patient chooses. The chaplain also makes rounds in medical oncology and radiation oncology and is paged when needed.
Resource Room: The cancer center has a Resource Room with computers with links to Dana-Farber–approved websites and with books/information on every type of cancer. A book exchange is set up where people may donate or take books of interest. Patient, family, and community members have free access to the Resource Room. The program is affiliated with many volunteer groups, who provide afghans and hats. “The Power of the Quilt Project” provides free quilts to patients. There is also a book drop in the Resource Room.
Other Support Resources: A boutique, staffed by certified fitters for breast cancer patients, is housed in the same building with medical oncology, radiation oncology, and the breast center. Wig prosthesis assistance is also provided by experts at the boutique.
Patient Satisfaction: The oncology nurse navigator recently conducted an anonymous survey to learn how patients evaluate navigator services to comply with the Commission on Cancer 3.1 navigation standard. The return rate was greater than 60% with phenomenal results. All scores were a 4 or 5, with 5 being the highest option. The only low scores received were with the comment that “a nurse navigator should be available 24/7”—an unrealistic expectation, but testimony to the value of the navigator.
Pamela Goetz, BA, is a patient navigator at Sibley Memorial Hospital, a community hospital in Washington, DC.
Description of Facility: Sibley Memorial Hospital, a member of Johns Hopkins Medicine, is a community hospital providing cancer care in Washington, DC; Maryland; and Virginia.
Types of Cancer Treated: The Johns Hopkins Kimmel Cancer Center at Sibley Memorial Hospital treats adults with breast, urologic, prostate, neurologic, head and neck, gynecologic, gastrointestinal, and blood cancers and sarcoma. Additionally, the Johns Hopkins and Children’s National Pediatric Radiation Oncology Program at Sibley Memorial Hospital was recently announced; it is the first dedicated pediatric radiation oncology program in Washington, DC.
Staffing: Dedicated nurse navigators for breast, gynecologic, and urologic cancers work with patients across the cancer continuum. A patient navigator focuses on care coordination for all newly diagnosed neuro-oncology patients, and in the area of survivorship for all cancer types. Three full-time clinical oncology social workers provide for the psychological, emotional, social, and practical needs for all cancer patients and families in the inpatient and outpatient settings, and short-term supportive counseling is provided for patients and families at no cost by the clinical social workers. A variety of support groups and workshops are facilitated by clinical staff, and 2 nurse practitioners with expertise in palliative care provide services to patients in the outpatient and inpatient settings. Patients are referred to community psychologists, sexual health specialists, and psychiatrists as needed.
Distress Screening: Sibley Hospital program uses the NCCN Distress Thermometer at pivotal points in patient treatment. The tool has been embedded in the EMR, which triggers a nurse or other clinical staff to implement the screening. Initially the screening was conducted by chemo nurses when patients began chemotherapy. The tool is now also being used by the nurses in radiation oncology, with plans to implement it with patients at a posttreatment survivorship consult visit. The goal is to be able to track patients across their treatment trajectory. For patients scoring higher than 6, the EMR makes an automatic referral to a social worker. The electronic screen becomes a part of the patient medical record.
Support Groups: The cancer program offers monthly on-site support groups for patients with advanced brain, breast, or gynecologic cancer, as well as a caregiver support group. These groups are facilitated by the social workers or nurse practitioner. The gyn/onc nurse navigator co-facilitates that group with the social worker. Guest speakers are invited to attend meetings to share information about or experiential practice in yoga, nutrition, meditation, expressive arts, and other support services. Patients with prostate cancer are referred to a support group at Suburban Hospital, a sister hospital in nearby Maryland. Patients are also referred to support groups at local community cancer organizations.
Rehabilitation: The physical impact of cancer treatment can influence patients’ mental and emotional status. Rehabilitation helps alleviate both the physical and resulting psychological effects that patients may experience from surgery, chemotherapy, or radiation treatment. Sibley Hospital provides on-site services for patients requiring lymphedema or pelvic floor rehabilitation. Patients are referred to reputable community rehabilitation facilities when geography or scheduling issues dictate that other options are needed.
Patient Education: Patient education occurs in various ways, including through the nurse navigators, a chemo-education class, and in a presurgical class in gynecologic oncology. In addition, cancer-specific teams offer free seminars, in which community members and those already impacted by a diagnosis can learn the latest about screening, diagnosis, treatment, managing a diagnosis, and quality of life.
Integrative Health: The hospital offers free or low-cost weekly classes in restorative yoga for cancer patients/survivors that in addition to providing a mind-body practice also serve to connect survivors with each other, building a sense of community. A weekly chair yoga class gives survivors with balance or mobility issues an opportunity to benefit from the practice. The program also has a free, weekly Mindfulness and Meditation class for anyone impacted by a cancer diagnosis, including caregivers and friends. The facilitator has training in Mindfulness-Based Stress Reduction, and so can employ multiple techniques in mindfulness. After conducting a feasibility pilot, an acupuncture service was established with a community acupuncturist providing service to patients 1 day a week. Patients wanting acupuncture need a referral from their oncologist, and the acupuncturist documents in the EMR, allowing collaboration between the providers and the practitioner. Patients who are interested in other integrative services are directed to community providers.
Other Support Resources: The cancer program offers the American Cancer Society’s program “Look Good Feel Better,” where a trained volunteer cosmetologist demonstrates techniques to combat the skin and hair loss effects of treatment. A certified bra fitter provides fittings for breast cancer patients at the hospital gift shop, where other products designed to support patients can be purchased.
Sibley Hospital has an Innovation Department, which trains staff to use the Design Thinking process to solve various problems and to inform quality improvement projects. The Design Thinking process involves a process that is focused on getting patient input from the beginning and then iteratively creating and testing prototypes and solutions with all stakeholders. The “Hub” serves all service lines, and the breast cancer program is working on a project to improve the patient experience.
The multidisciplinary team, including the nurse navigator, lay navigator, social workers, financial counselors, and others can effectively collaborate to deliver psychosocial support that is patient-centered and holistic. Distress screening can function as a central point for patient psychosocial assessment, with effective communication among the care team and consistent referrals to in-house and community resources in place to ensure that patient needs are being met. Each institution can find the best way to care for the psychosocial aspect of care based on staffing, accreditations, and needs assessments.
NCCN Distress Thermometer. www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf.