Helping Survivors of Head and Neck Cancer Face the Future

Head and neck cancer treatments can cause serious damage to an individual’s appearance and self-image. Nurses need to be prepared to provide survivors with both medical and emotional support in dealing with the aftereffects.

According to the American Cancer Society, an estimated 436,060 survivors of head and neck cancer are living today in the United States, and that number is growing.¹ Survivors often cannot escape the effects of their disease because of the prominent location of their cancers. Their recovery postsurgery remains very visible to the outside world.

When patients are told that they might lose sight in an eye or lose a section of jaw due to head or neck cancer, multidisciplinary teams play a key role. Compassionate specialists and healthcare providers ready to address questions and needs are crucial to enabling patients to navigate the road ahead. Nurses are vital members of this multidisciplinary care team.

A VERY VISIBLE DISEASE

Disfigurement is a significant concern for patients with head and neck cancer, according to Colleen O’Leary, MSN, RN, AOCNS. “Although there are other disfiguring surgeries, such as mastectomy or colostomy, often those can be hidden with prosthesis or clothing,” she says, “but when it’s your face or neck, you can’t hide it.”

Nurses help these survivors learn how to come to terms with their new normal. Through her dual associate director roles at Ohio State University Wexner Medical Center in Columbus, O’Leary educates nurses about incorporating compassion, as well as evidence-based practice, into the work of oncology nursing. She serves as an associate director of nursing education at The Ohio State University Comprehensive Cancer Center Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (The James), and as associate director of Evidence Based Practice (EBP) at the Wexner Medical Center.

LESSONS FROM SOCIAL WORK

Before she became a nurse, O’Leary was a social worker. For 26 years, she incorporated lessons she learned in social work into her oncology nursing practice: How to view and treat the whole person and to try to understand patients’ family, work, and social environments as part of a method of care.

“That ability to talk to patients, to see them for who they are and not their disease, has been invaluable,” O’Leary says.

O’Leary came by some of this understanding the hard way. In and out of hospitals as a child, she viewed nurses as her “second moms.” Through personal experience, she learned what a difference a nurse who develops a relationship with a patient can make. The professional model of relationship-based care is institutionalized at The James, where clinicians integrate care of patients and family, colleagues, self, and community. “I take that vision of nursing at The James and weave it into my daily routine,” O’Leary says.

This model is crucial for both patients and those working in the head and neck cancer specialty. Patients need support for a multitude of issues that surround survivorship.

NO JUDGMENT

When explaining to nurses how to support patients with head and neck cancer, O’Leary stresses a key message: “Not judging someone for their lifestyle is critical.”

Most head and neck cancers begin in squamous cells, which line moist surfaces such as those in the mouth, nose, and throat. Tobacco use, heavy alcohol use, and infection with human papillomavirus (HPV) increase the risk of many types of head and neck cancer.²

O’Leary has observed that providers may find it difficult to care for these patients because smoking and alcohol and drug abuse often contributed to the growth of their cancers. Addicted patients are hard to treat. “Knowing that something they may have done in their past led to this can be difficult,” she says.

Nurses must retain their objectivity and not play the blame game. “It is important to treat everyone with compassion and respect,” O’Leary says. “Know that this diagnosis has changed them inside and out, and support them through that.”

Patients’ overall coping skills can be an important but often overlooked issue in head and neck cancer treatment. For example, drug abusers may have to detox prior to surgery. “We have had to cancel surgeries because patients could not quit using,” O’Leary says. “We have tried to set up detox programs prior to surgery. Patients who are willing to participate [in these detox programs] have a much better outcome. Also, as younger and more educated patients are on the rise [with HPV-positive head and neck cancer] outcomes are better.”

BE THE SOURCE

Head and neck cancer survivors are often not prepared for how they will look immediately after surgery. The changes to their body can be overwhelming, and they may need a lot of support.

They should be able to rely on nurses as a good source of knowledge, so O’Leary provides relevant clinical education to her staff to ensure that survivors are receiving competent care.

“Most often the patient will have chemoradiation after healing from surgery, so [adverse] effects of both need to be assessed and reviewed with each treatment. Mucositis is prevalent 100% of the time in patients with head and neck cancer who are receiving chemo and radiation at the same time. Teaching them what to expect and trying to head off severe pain is imperative,” O’Leary says, adding that nurses and patients need to be aware of other prominent adverse effects (AEs), including nutritional issues related to mucositis, psychosocial issues, and chronic xerostomia.

EVIDENCE-BASED PRACTICE AND PROFESSIONAL DEVELOPMENT

Mucositis is an extremely common AE for survivors of head and neck cancer, and many patients at The James are receiving a new type of treatment for oral lesions based on an EBP project. “We have a nurse-run clinic using low-level laser therapy to treat oral mucositis, and there is evidence that it is useful for prevention, as well,” O’Leary says. “It is helpful in reducing mucosal lesions in size and can reduce the number of times that chemotherapy is held.” Decreasing the number and size of mucosal lesions can also lead to an overall decrease in the rate of infection, because the lesions are less open and active after laser therapy.

“We have gotten to the point where we don’t just do EBP projects—we are using EBP decision making at all levels at The James,” O’Leary says. “All nursing councils have an EBP mentor on them. We base all decisions on evidence when possible.”

Throughout her career, O’Leary has seen many EBP projects lead to huge changes for oncology patients everywhere.

For example, O’Leary was part of the Oncology Nursing Society’s Putting Evidence Into Practice (PEP) project, a group focused on infection prevention and oral mucositis. She helped write oncology recommendations for nurses in a pocket style guide.

One patient in particular helped O’Leary understand that survivorship comes with unique challenges that can affect each patient differently. The night before she was to present at a daylong conference on head and neck cancer, she met a long-term survivor who was also slated to speak, and he described his challenges to her.

“He was a teacher and so he spoke a lot, but now he had long-term xerostomia that required him to always have water with him,” O’Leary recalled. “He had issues with drooling so needed to keep tissues with him, and at times he was difficult to understand. His life had changed significantly, but he was making it work.”

Head and neck cancers are often complex, involving painful AEs and can affect a patient’s life in unexpected ways. Nurses can be most effective in their work by keeping up on the latest developments and listening closely their patients.

HEAD AND NECK GUIDELINE

In 2016, a head and neck cancer survivorship guideline was released in CA: A Cancer Journal for Clinicians, a journal of the American Cancer Society. A collaboration between the CDC, American Cancer Society, and George Washington University Cancer Institute led to the guideline’s development. This resource aims to better educate both patients and providers on long-term goals and follow-up recommendations, along with providing detailed information on “how and when to test for new or returning cancers, managing side effects, making healthy lifestyle changes, and coordinating care among primary care providers and specialists.”2 Nurses can use this to brush up on current knowledge and treatment standards.

Caring for patients with head and neck cancer can bring a variety of challenges for both patients and providers. Improving quality of life in survivorship focuses on several aspects of patient care, including providing support for development of appropriate coping mechanisms and skills, education regarding lifestyle risk factors, collaboration of ongoing care, and management of individual long-term goals. Healthcare professionals are advised to practice self-care when providing assistance to this complex population, as it is critical to ensure these patients continue receiving dignified and compassionate care throughout their arduous healthcare journey.

As a nurse educator, O’Leary enjoys supporting others in the profession, as well as seeing their involvement. “I have gotten to where I am today because people mentored and supported me,” she says. “I love paying that forward, showing them what they can do.”

REFERENCES

• ACS releases long-term care guideline for survivors of head and neck cancer. American Cancer Society website. cancer.org/latest-news/acs-releases-long-term-care-guideline-for-survivors-of-head-and-neck-cancer.html. Published March 22, 2016. Accessed February 24, 2018.
• Head and neck cancer—patient version. American Cancer Society website. cancer.gov/types/head-and-neck. Accessed February 23, 2018.