This article first appeared in the June 2020 edition of Oncology Nursing News.
Diane E. Paul, MS, RN is the Chief Operating Officer, Drug Development Associates Founder, Cancer Hope Network
The use of chemotherapy to treat cancer has developed over many decades, becoming more widely used as an adjuvant therapy for cancer in the 1970s.1 I became interested in working in medical oncology treatment in the late ‘70s after working as a critical care nurse for many years. Chemotherapy is not an easy treatment to tolerate, and was even more challenging in those days. Fear of the diagnosis, nausea, and vomiting and other associated adverse events (AEs) made it very difficult for patients to be motivated to continue therapy. This was before the development of effective antiemetics and drugs to stimulate white and red blood cell production. Many patients said that the treatment was worse than the disease, and some were unwilling to complete their regimen.
My oncology patients needed more support than the health team could offer. Over and over, I heard, “How are other patients doing on this treatment?” To tolerate the AEs of treatment, patients needed to know they were not alone in their feelings or their fight. They needed hope that only a cancer survivor could provide. At that time, there was only one peer support program in New Jersey, focused primarily on patients with breast cancer. I sent many of my patients there, only to hear that it was not helpful being in a group with patients with terminal disease who were discussing end-of-life care and preparing to die.
Working with community volunteers from our local Junior League, I began collaborating with oncologists, nurses, and community hospitals to develop a 1-on-1 support program for patients at all stages. Almost 40 years later, that program, initially called CHEMOcare, is now Cancer Hope Network (CHN).
It is gratifying to know that CHN’s peer support program has been the inspiration and model for similar programs in other therapeutic areas. Today, there are “buddies” in many types of diseases and areas, such as for cardiovascular patients, and mentors for patients with newly diagnosed diabetes.
In its first year, the organization served 14 patients. Since then, the organization has served more than 40,000 patients, caregivers, and loved ones. The staff and volunteers collaborate with oncology nurses, navigators, and social workers around the country to provide support and care to patients facing a wide range of disease states. The organization provides comprehensive training for support volunteers and oversight for volunteer-client matches, coordinating with nurses and other professionals on the care team. Volunteers are trained to avoid making specific medical recommendations regarding protocol or place of care, so as to avoid contradiction of current care.
For patients facing a devastating illness like cancer, there is a need for support from all modalities – professional, family, and friends. A survivor mentor brings value to the mix. There is nothing quite like hearing the words, “I’ve been there,” to inspire hope. Speaking with a cancer survivor or caregiver who has walked the same road brings a layer of lived experience that is emotionally beneficial for patients’ sense of well-being.
Anecdotally, we see that it is also helpful in encouraging patients to continue treatment. Take the case of Beth, an 18-year-old woman on her third round of chemotherapy for Hodgkin disease who was ready to discontinue treatment. She was matched with Maggie, a young survivor who had received the same diagnosis and treatment several years earlier. The two women met and the hope generated was palpable. Maggie was healthy and recovered, with beautiful long hair that had grown back (one of Beth’s many fears). With Maggie’s encouragement, Beth completed treatment and went on to become a support volunteer herself.
The coronavirus disease pandemic has hit immunocompromised patients particularly hard, as oncology centers and hospitals have been forced to shutter their in-person support groups. The need for trustworthy, virtual peer support is greater now than ever. The ability to find peer support for patients is a valuable resource for oncology nurses, whose resources are limited by distancing requirements.
CHN’s 400-plus support volunteers are ready to provide community without physical contact. Nurses and other professionals can refer patients directly to the website or work with the programs team to find the perfect match for their patient. The team will then keep professionals updated as the match progresses. For nearly 40 years, Cancer Hope Network has built on the simple, yet profound concept that through connection with someone who has been there, cancer patients and their loved ones can navigate their experience with a greater sense of well-being and hope. The mission and vision have not changed, and we will continue to partner with oncology nurses and other professionals until cancer is defeated.
DeVita VT Jr, Chu E. (1980). A history of cancer chemotherapy. Cancer Res. 2008;68(21):8643-8653. doi:10.1158/0008-5472.CAN-07-6611