- Survivorship Programs
- Integrative Modalities
- Exploring End-of-Life Care: Impact on Patients, Care Partners, & Navigators
The most recent Commission on Cancer (CoC) standard, 4.8, lays out the new requirements for cancer survivorship programs, and in this session the presenters focused on increasing awareness of the changes to the standard and shared their knowledge of best practices in building a survivorship program. The 2-pronged presentation was delivered by Jason King, RN, BSN, OCN, Assistant Nurse Manager, Prisma Health Cancer Institute, Center for Integrative Oncology & Survivorship (CIOS), and Center for Cancer Prevention & Wellness (CCPW), who concentrated on the theoretical aspects of creating and maintaining a comprehensive survivorship program at a high level; and Rozalynn Hite, OTR/L, HealthTree Coach for Multiple Myeloma Director, who offered an up-close view of how one such program is conducted.
Mr King spoke specifically to delivering survivorship care that focuses on prevention, wellness, and evidence‐based guidelines for screening. One aspect that requires careful attention, he said, is the curation of evidence‐based resources and tools that will help to develop or enhance the survivorship program. Among these, a system of metrics that identifies benchmarks is crucial.
The program for which Mr King works comprises a group of clinics and services that assist patients in navigating their individual cancer experience. The staff at CIOS is composed of a multidisciplinary team of health professionals who focus on cancer surveillance and cancer prevention through all stages of cancer—from initial treatment to posttreatment survivorship. Through its Lifetime clinics, CCPW offers specialized care to patients at higher risk. One of the tasks of the staff is to actively navigate patients through lifestyle choices and surveillance tests. To that end, a detailed intake is central to the success of the program. During the initial appointment, nurse practitioners address questions from cancer survivors about integrative and complementary therapies, supportive services, and connections to other survivors. Patient’s needs are assessed and their questions about survivorship are answered.
Mr King offered some tips for organizations that are just beginning survivorship programs, or whose programs need strengthening. He suggested finding a “physician champion” who will support efforts in building the program and who will also help colleagues and administrators see the program’s value as well as working with internal and external partners to build on each other’s strengths. A satisfaction survey should be created to help identify opportunities for improvement or to address topics that are overlooked or emerging.
Ms Hite has worked for more than 20 years as an Occupational Therapist. When her husband was diagnosed with myeloma in 2015, she took on a new role as caregiver and advocate and she has been leading the Multiple Myeloma program with the HealthTree Foundation since it began in 2019. She directs more than 200 volunteer coaches in providing personalized support to 1,500 myeloma patients and caregivers. This innovative program offers patients access to a Patient Data Portal with 10,500 registered users. It allows patients to track their disease, see treatment options and clinical trials, and participate in surveys and studies. Other facets of the program include a unique Myeloma University taught by expert faculty and a Myeloma Community with 19 chapters. Podcasts and social media platforms are planned for 2023. The program’s extensive outreach and community-building efforts offer one-on-one personalized support and provide hope for many in their survivorship journey.
This breakout session started on a personal note as Kristina Rua, MSN, RN, OCN, ONN-CG, who is currently the Director of Oncology Navigation for Sarah Cannon’s East Florida Division, introduced the topic. Ms Rua is an oncology nurse who helped her father through difficult periods in his prostate cancer treatment. She introduced him to complementary modalities and alternative ways to health that work alongside allopathic medicine. Ms Rua also spoke about her personal journey and how she incorporated integrative modalities into traditional treatment when she was diagnosed with a complex autoimmune disease. While her own illness was not cancer related, she used the knowledge she had gained through her father’s treatment to augment her path to recovery.
Pamela Goetz, OPN‐CG, Survivorship Program Manager, Johns Hopkins Kimmel Cancer Center, Sibley Memorial Hospital, was next to present. In her presentation, titled “Introduction to Integrative Health Modalities,” she gave a detailed overview of what integrative health is, how patients may benefit from various modalities, and the role of the navigator in removing barriers to complementary approaches to care.
Ms Goetz explained that integrative health is evidence‐based healthcare that addresses the interdependent aspects of the individual’s body, mind, and spirit. What makes it integrative is that the practices are used alongside allopathic treatments and do not replace them. On the other hand, alternative practices are used instead of conventional medicine. In integrative healthcare there is emphasis on treating the person holistically rather than focusing on only one organ system. Integrative healthcare also emphasizes using a multimodal approach, for example, combining medication, physical rehabilitation, and psychotherapy with complementary health approaches such as acupuncture, yoga, and probiotics.
Navigators should know about these integrative approaches because research shows that up to 80% of cancer patients are using these modalities and patients with chronic health conditions are more likely to use complementary medicine than those who do not have a chronic condition (33% vs 24%). The most popular modalities include exercise, acupuncture, meditation, yoga, massage, music therapy, nutrition, and dietary supplements and herbs. Patients often find that these modalities help them manage medication side effects as well as cope with the emotional aspects of cancer.
Challenges do exist in the delivery of these modalities to a wider patient population. Lack of awareness, demanding treatment schedules, and the additional cost may inhibit patients from exploring these practices. At the same time, challenges exist for healthcare providers as well in that they may have limited experience or knowledge of reliable practitioners for referral.
Navigators can expand their role by researching what is available locally and online, making referrals, trying some practices for themselves, and creating resource lists to share with teams and patients. In addition, navigators can serve as liaisons between the patient and care team.
The role of the navigator in supporting patients in accessing integrative services was further explored by Zarek Mena, OPN-CG, Breast Program Manager, Nuvance Health. Ms Mena noted that “internationally, 40% of patients with cancer have reported using complementary therapies to address cancer-related symptoms, improve the effectiveness of conventional treatments, and provide hope.” Ms Mena devoted time to discussing how programs can effectively reach out to patients and enumerated best practices. She reiterated that some of the previously mentioned interventions can be very helpful to patients and staff alike, including creating a list of locally available and online resources and sharing this information with colleagues who are champions of integrative health. She emphasized that “If you have the power to help, you have the responsibility to help.”
The session ended with “The Therapy Dog Will See You Now,” presented by Margaret Rummel, RN, MHA, OCN, NE-BC, HON-ONN-CG. Attendees learned the life story of Ms Rummel’s therapy dog, Darla. Ms Rummel detailed the adoption, selection, and training involved in providing pet therapy services to oncology patients. She covered topics to be aware of such as facility policies and procedures, gaining administrative support, addressing infection control, and insurance. Photographs of Darla at work, delighting both patients and healthcare providers, were a highlight of the session.
Exploring End-of-Life Care: Impact on Patients, Care Partners, & Navigators
As navigators, “we see patients pass regularly,” said Megan Solinger, MHS, MA, OPN-CG, Director, Provider Relations & Navigation Ulman Foundation, in this session on working with patients at the end of life (EOL). The role of the navigator during this time often involves helping patients and their families process their expectations and fears of death. The navigator also facilitates coordination with appropriate resources and provides an ear for patients and their loved ones.
For the patient at the EOL, the experience can be overwhelming. It is an intellectually challenging and emotionally distressing time for those with advanced cancer. Their families and friends must also grapple with their own feelings and fears. Each patient’s family is different, with its unique needs and values, and will have to confront a set of personal discussions and decisions. In addition, EOL impacts not only the patient, but also oncology clinicians and other professional caregivers as well.
Advance planning can alleviate some of the distress that occurs at this time. Ideally, planning for EOL should begin well before death is impending. Some things that can be considered early in the process, even at the time of diagnosis, are advanced directives; wills and estate planning; and MOLST, DNR, and DNI orders and healthcare proxy. Other items that can be addressed if the participants are open to such discussions include memorial or funeral wishes and arrangements. This is also potentially a good time to begin to think about special desires the patient may have, such as planning their legacy, and how they want to spend their last days. Ms Solinger added that while the concept of a “good death” is controversial, it may nevertheless be a useful way to think about helping the patient prioritize their goals and the type of EOL care they wish to receive.
Many patients worry that they will not receive adequate pain management or will endure an extended dying period. At the same time, their caregivers need to find ways to cope with changes in the relationship dynamics with the patient. Caregivers are often in the position of providing emotional support to the patient and may neglect their own needs. Advance planning can help them create a sense of control and relieve the burden of leaving decisions and interventions to others.
Although this planning can be difficult and painful, failing to put EOL care in place can lead to negative consequences such as increased psychological distress, treatment inconsistent with personal preferences, and for the family, a more difficult bereavement, especially if they are troubled by feelings of guilt or regret.
Ms Solinger also addressed the very real issues that navigators deal with as members of the caregiver team. Navigators often care for many patients simultaneously and, consequently, they may be dealing with several deaths in a short amount of time. She said that it is normal for navigators to feel stressed or overwhelmed while focusing on multiple patients and priorities. Not only does stress create physical, mental, and emotional strain, but it can also lead to vicarious trauma (also known as compassion fatigue) and burnout. Members of the helping professions are the most susceptible to vicarious trauma. Signs of vicarious trauma include feelings of malaise, irritability, confusion, helplessness, and resentment.
Navigators must take care of themselves mentally, emotionally, spiritually, and physically. Ms Solinger recommends that navigators fully utilize their PTO and explore hobbies or physical activities that interest them. It is also important to have someone to talk to, whether that is a therapist, a friend, or a support group. Although this step is often overlooked, navigators should put boundaries in place to safeguard their well-being. That will mean something different to everyone, but some measures could include not attending patient funerals or memorials. She reminds navigators not to allow themselves to become desensitized to death and dying or to become a martyr. Never neglect yourself at the expense of others, she counseled navigators.