Compassion fatigue ... burnout … job-related stress. Whatever the term used to describe it, most oncology nurses will have experienced the feeling themselves or witnessed it in their colleagues, and more than likely, both.

Burnout is a word that many people use to describe what they feel when they can no longer work effectively. It is a reaction to external forces, such as overwork, difficult working conditions, or conflicts with bosses or coworkers, and results in a breakdown in the ability to stay focused and on task.

People from all walks of life and all professions can experience burnout, but it can go deeper among people who work in caring and giving professions like nursing. These professionals can also develop compassion fatigue (CF).

Charles Figley, PhD, now the director of the Tulane University Traumatology Institute, formally defined 

 in 1995 as a combination of burnout and secondary traumatic stress, the type of stress experienced by people who care for others who are traumatized or are suffering.

Compassion fatigue affects 16% to 39% of registered nurses. And although all nurses can experience it no matter where they practice, those at highest risk are nurses working in emergency, oncology, hospice, and pediatric settings.

“In general terms, burnout is more of a personal experience, whereas compassion fatigue is a relational experience,” Jillian Kenney, BSN, RN, OCN, explained. “While some of the symptoms may be the same, the motivation behind those symptoms is the biggest difference.

“Someone suffering from professional burnout may feel that they don’t have adequate resources, they don’t have adequate compensation, and that leads to a dislike of their place in their company or business, whereas compassion fatigue results from the perceived lack of ability to attain a shared goal.”

That goal is the well-being of the patients. “If your patient isn’t doing well, there’s almost a subconscious sense of failure on the part of the nurse,” continued Kenney, a clinical nurse in oncology at the UCLA Medical Center in Santa Monica, California.

Compassion is a vital part of a nurse’s role, and compassion satisfaction is the positive side of being in a helping profession.

 When compassion satisfaction rates remain high, this is positive for both nurses and their patients. Patients who feel satisfied with the care they received reported better overall satisfaction with their hospital experience. But the flip side of compassion satisfaction is CF, and when satisfaction drops, risk of CF follows, as does the risk of lower quality patient care.

Inpatient oncology units often follow the mixed-model setting. In the course of one shift, nurses may provide care to patients who are receiving active curative treatment, while at the same time helping patients who are receiving palliative or end-of life care, depending on their assigned patient load.

By moving continuously from one situation to another, if a nurse does not feel in control or supported, he or she is at risk for CF. Patricia Jakel, RN, MN, AOCN, a clinical nurse specialist also at UCLA Santa Monica Medical Center, shared this story:

“One of my young nurses came to me. He’s a great nurse. He said to me, “The patient dies. I do what I have to do with the family, but then I have to go next door and begin the chemo on a newly diagnosed lymphoma patient, and I have to put on my happy face.” That’s really hard in a fast-paced environment. You can take 10 minutes at work, but most of us cry in our cars on the way home.”

Nurses who experience CF usually dread going to work, may have difficulty concentrating, feel nervous, anxious, or pessimistic, and have low self-esteem. Anger towards coworkers is not unusual. At first, the signs may be brushed off as having a bad shift or not feeling up to par, but as the feelings continue or intensify, this could point to CF.

The Professional Quality of Life Measurement (ProQoL) tool was developed and made available for free from ProQoL.org, to help professionals analyze their feelings, and measure how they rate on scales for burnout and secondary traumatic stress.

 This measurement has been in use since 1995, and has been used extensively in CF research. Any person or facility may download and use the tool, which can be used as a starting point determining CF.

Before every plane takes off, passengers are reminded of emergency procedures, which include instructions regarding the oxygen masks. If passengers are traveling with a child or someone who needs assistance, they are instructed to put on their own oxygen mask first, so they are able to help their companion. Nurses must take that same approach. They must take care of themselves, so they can take care of their patients and the others who need them. In her research into CF, Patricia Potter, RN, PhD, FAAN, and her colleagues determined that there were five approaches or strategies to self-care that nurses could employ, which they named compassion fatigue “antibodies.”

	Learning how to relax or achieve a feeling of peace

	Learning how to regulate thinking and perception

	Writing a covenant and choosing how to live and work

	Healthy living, participating in hobbies, etc

Self-care approaches provide nurses with a variety of options, from keeping gratitude journals to taking regularly scheduled vacations. Becca Hawkins, MSN, ARNP, ACHPCN, the Director of Compassionate Care at Providence Health & Services in Pendleton, Oregon, likes to promote mindfulness as a part of self-care. She has done extensive research and teaching about mindfulness and meditation for nurses. She uses this approach as self-care because it can be done anywhere any time—literally in the moment.

Jon Kabat-Zinn, founder of the Mindfulness-Base Stress Reduction (MBSR) program described mindfulness as an “awareness that arises through paying attention, on purpose, in the present moment, nonjudgmentally.”

“We’ve been working a lot throughout our healthcare system with mindfulness. We’ve been starting with self-compassion, and paying attention to when you’re really hard on yourself, and beating yourself up over a situation or just being negative,” Hawkins said. “When this happens, you’re not able to see the positive things.”

A good place to start with mindfulness is when nurses are washing their hands. After all, how many times a shift do nurses wash their hands, Hawkins asked. “As you’re using the hand sanitizer, you just really feel your hands, listen to your heart, feel your breath, feel whatever practices you do and it brings you back here, instead of thinking, “I’m walking into this room and I’m going to have to break bad news,” she explained.

With mindfulness, there is no looking back at what happened or forward at what might happen.  

Most nurses do already know what they should do in order to prevent CF, but knowing what to do and actually doing it are two different things.

Kenney and Jakel learned of an app that would help nurses remember to use these strategies. They initiated a study to evaluate the use of the Provider Resilience Mobile App among oncology nurses. Originally designed by the Department of Defense for those who cared for Iraqi war veterans, the app was adapted for nurses for the study. Kenney described the app as something that would remind nurses to do the small pieces of daily self-care.

“From there, it offers various resilience builders, and also helps you with your resilience killers,” Kenney explained. “It helps you see some of the negative coping strategies that you might be using and not realize you’re using. It also offers very simple resilience builders that you can do throughout the day.” The app asks when the provider last did a positive act, but it also asks things like when was the last time the user ate junk food, sat for too long, and so on, to help identify unhealthy behaviors as well.

Also included in the app is a version of the ProQoL so users can do an initial assessment, and it measures compassion satisfaction and possible levels of burnout or potential secondary traumatic stress.

Jakel pointed out that there is no one-size-fits-all approach to preventing or dealing with CF. “I think it’s a combination, be it self-care, or meditation,” she said. “I really liked that the app had daily affirmations that you could read through. The app was easy because it was there, and it was one measurement, one thing, one intervention that people could do to build their resilience.”

 Practicing gratitude and setting intentions is another form of self-care. Gratitude journals can help nurses focus on themselves and the positive things that are in their life. Hawkins believes that the act of physically writing down three gratitudes at night sets the stage for your brain to relax, allowing  you to wake up with a positive mindset. This is followed by starting your day with your intention. “This is the day I’m going to….”

The issue of CF cannot be dealt with by the nurses alone. According to Hawkins, part of the problem in dealing with CF among nurses starts with acknowledging that it is happening. “Half the workforce is burned out,” she said. “It’s interesting, because what other industry allows people to participate in the job when they’re impaired [from burnout]? It’s been shown over and over again in the literature that when you’re burned out, there’s a higher risk for errors, there’s more sickness, etcetera.”

Now that we know that CF is a problem, we have to start taking care of ourselves and each other. “That means we have to acknowledge what is hard in healthcare,” Hawkins explained.

“What is hard about oncology nursing? What do we do with all of the suffering we have born witness to? Where do we put that?” The leadership needs to put programs into place that allow the nurses to express their feelings and to help them deal with them. The leadership needs to hear what the nurses are saying without getting defensive, Hawkins said. Those in charge have to be able to listen when their nurses are talking, without thinking that the nurses are being disloyal or disgruntled.

There is a school of thought that says that you cannot develop compassion fatigue if you take care of yourself and practice mindfulness.

In a personal reflection piece published in the 

, palliative care physician Lisa Marr asks, “Can compassion fatigue?” According to Marr, in order for there to be compassion fatigue, there must be a finite amount of compassion in the first place. When this finite amount runs out, it needs to be replenished, and it starts over again.

“I believe that if we are truly engaged in that moment, not focusing on ourselves or worrying about where I should or could be at that moment, but truly engaged in the interaction with the other person, then compassion cannot fatigue, and frankly, burnout is less likely to occur.”

This brings us back to mindfulness: “If we are wholeheartedly engaged in each moment, responding to what is in front of us, not judging or labeling ourselves or others, then I believe compassion cannot fatigue. Compassion can arise anew in each situation, each moment, since it is a response to what is in front of us. It’s what we do, not who we are,” Marr concluded.

Compassion fatigue (CF) is estimated to affect 16% to 39% of registered nurses, and especially affects those practicing in emergency, oncology, and hospice settings.

Moving continuously from one situation to another can increase risk for CF.

The Professional Quality of Life Measurement (ProQoL) is available online and can help assess for CF.

To avoid CF, practice self-care and self-compassion, eg, gratitude journals, taking regularly-scheduled vacations, and mindfulness “in the moment”.

“Acknowledge what is hard in healthcare”—engage institutional leadership to improve the culture and support nurses.

US Library of Medicine. PubMedHealth. Depression: What is burnout syndrome?  

Compassion Fatigue: Coping with Secondary Traumatic Stress Disorder in Those Who Treat the Traumatized

Potter P, Deshields T, Berger JA, et al. Evaluation of a compassion fatigue resiliency program for oncology nurses. 

Stamm BH. Compassion Satisfaction and Compassion Fatigue. April 26, 2012. 

Potter P. Compassion Fatigue: Prevalence Among Oncology Nurses. Presented at: Missouri Oncology Society Spring 2015 Membership Meeting; April 14, 2015. 

Professional Quality of Life Scale (PROQOL). Compassion Satisfaction and Compassion Fatigue. http://bit.ly/1OWPcb. Accessed April 2, 2016.

Articles

Cover Story

Compassion Fatigue: How Nurses Can Care for Themselves

 Quality of life is a concept that oncology nurses are very familiar with. Most nurses would say that quality of life is very important in our patients’ lives. However, it’s also important in our lives as we deliver patient care.

Most of us are familiar with assessing or measuring quality of life (QOL) from a patient’s perspective. We now have tools that enable us to measure the QOL of professionals who deliver care to patients.

One of these tools is the Professional QOL or ProQOL Scale, which measures the positive and negative effects of professionally caring for others. The ProQOL 5, available in 21 languages at no cost on the website 

 is the latest version of the tool. The 30-question rating tool has subscales for measuring the frequency of compassion satisfaction, burnout, and compassion fatigue in the month prior to completing the questionnaire. Self-scoring directions, along with information on how to interpret the results of the subscales, are detailed on the website.

While many tools focus only on the negative consequences of providing care, the ProQOL 5 includes a subscale on compassion satisfaction, or the positive aspects of caring for others in a professional role. Compassion fatigue, on the other hand, is a manifestation of the negative aspects and may include the symptoms of exhaustion, frustration, anger, and depression.

Another subscale measures burnout. From the research perspective, burnout is associated with feelings of hopelessness and difficulties in dealing with work or in performing a job effectively. These negative feelings usually have a gradual onset, and typically reflect the feeling that job performance makes no difference, or they can be associated with work overload and/or a non-supportive work environment.

Preventing burnout and nipping it in the bud when it occurs is the responsibility of both the nurse and the workplace. On the personal level, we all need to be able to speak up and ask for help or request a break. Proactive workplaces routinely survey staff to assess the workload and care delivery, and identify ways to increase job satisfaction without compromising care.

For instance, a busy infusion center implemented a policy that prohibited chemotherapy administration appointments after 2 PM on Fridays, which for the most part, ensured that the staff would be able to finish their work on time. As one nurse noted, this simple strategy enabled her to look forward to the start of the weekend rather than dread the end of the work week.

An interesting component of the ProQOL 5 is its ability to generate a secondary traumatic stress score, which measures the impact of secondary exposure to stressful events. In other words, this type of stress is caused by identifying with others who are experiencing stress, and is termed

. The symptoms of this type of stress are rapid in onset and associated with a specific event. Symptoms may include anxiety and fear, “reliving” or thinking about the event, avoiding things that are reminders of the event, and difficulty sleeping.

Perhaps the most illustrative example of secondary traumatic stress occurred in a small oncology practice I visited. I was told about the worst-ever day in the lives of the staff there; the founding oncologist of the practice walked out of an exam room, said he didn’t feel well, and collapsed. Despite the best efforts of the staff, the oncologist could not be revived, and as one nurse said, “It still haunts me every day even though it happened last year.”

The ProQOL.org website lists online resources that range from training and continuing education programs to advocacy organizations. One example is the Compassion Fatigue Awareness Project and its parent organization, Healthy Caregiving (

). This website offers training materials with the goal of aiding caregivers in practicing “authentic, sustainable self-care.” As oncology nurses, we need to not only recognize that quality of life applies to us as well as our patients, but we must also identify ways to sustain the quality of our professional lives.

Lisa Schulmeister, MN, RN, ACNS-BC, FAAN is an oncology nursing consultant and editor-in-chief of 

Nurse's Notes

We now have tools that enable us to measure the quality of life of professionals who deliver care to patients. 

Quality of Life: Not Just for Patients

In this magazine, we often report on the outstanding and compassionate care that oncology nurses provide to patients and their families, but it’s also important to highlight the care that these dedicated professionals need to provide to themselves.

Estimates are that 16% to 39% of registered nurses may experience compassion fatigue, and those practicing in the oncology setting are especially vulnerable to feeling stressed and overwhelmed. It’s not enough, however, to simply identify the problem; we need to find solutions to support nurses, and who better to come up with these ideas than nurses themselves?

In our cover story this month, we talk with nurses about the solutions that they have found most beneficial for self-care, including specific “antibodies” to compassion fatigue and how one creative nurse was determined to find a space where her colleagues could go for just a few minutes to completely switch off and come back to the floor recharged.

As the director of Patient Care Services at the Cancer Treatment Centers of America at Midwestern Regional Medical Center noted in one of our interviews for the article, “If you want to provide an environment of healing and hope to your patients and families, you also have to provide that kind of environment to your employees.” We couldn’t agree more. Nurses need the right professional support to carry out the role that they perform so well, day in and day out.

It’s not really surprising then, that year after year, these dedicated professionals are ranked as the most trusted profession, a point underscored by Susan Hassmiller, PhD, RN, FAAN, when we sat down with her recently at the Robert Wood Johnson Foundation in Princeton, New Jersey, where she is Director of Nursing. Hassmiller also directs the nationwide Future of Nursing: Campaign for Action, and in her thoughtful reflections on the profession’s challenges, she reminds us how the ever-changing landscape of healthcare offers nurses unique opportunities to practice to the full extent of their training and participate actively in multidisciplinary efforts to improve patient care.

, two expert nurses practicing in the radiation oncology program at the Moffitt Cancer Center in Tampa, Florida, provide an update on considerations for nurses when treating the growing numbers of patients diagnosed with HPV-related oropharyngeal cancers.

We look forward to reporting on these important issues and more at the Oncology Nursing Society’s 41st Annual Congress later this month in San Antonio. Look for our coverage in the next issue of 

In the meantime, as always, thank you for reading.

From the Chairman

Spotlight on Self-Care: Fresh Ideas to Refresh Oncology Nurses

The fear of undergoing cancer treatment is universal. Imagine, however, how it would feel to have a medical team that cannot speak a word of your language or even pronounce your name. Envision trusting all of your communication to a series of interpreters whose skill level you have no way to assess. When I lived abroad, I could barely summon up the courage to have my hair cut by the locals! When non-English speaking patients access our medical system, it can be an immensely stressful time.

The many layers and multiple staff members of the American healthcare system may be in stark contrast to the medical experiences for someone from another country, and the length of time to interpret communication for non-English—speaking patients may cause even more distress. We can see why these patients may feel lost in the maze of US healthcare and are confused. Moreover, these gaps in experience and understanding may lead to nonadherence and even a sense of distrust.

Navigators are well-positioned to add an element of relational trust into the healthcare experience for patients from other cultures by eliciting surprising patient histories, using their assessment and listening skills, and asking spot-on questions.

I recall a telephone call I once had with a Vietnamese patient, who through an interpreter, mentioned symptoms she was experiencing. I turned the call over to Debbie Bickes, RN, MN, OCN, my supervisor and an oncology nurse, who discovered that the patient had been effectively starving herself by eating only rice water soup for 30 days after her surgery because she was told to have a “light diet” after surgery. The patient also mistakenly believed that she was not allowed to walk downstairs and had stayed in her bedroom for 30 days.

Using her nursing assessment and communication skills, Debbie had taken the time to uncover a serious misconception. The time she took was invaluable and allowed for an appropriate intervention—connecting the patient with her physician, empowering her, and helping to dispel a cultural belief that one should refrain from asking a doctor questions.

Over the past decade, my goal has been to help people of other cultures receive the best healthcare possible, researching many groups and learning many languages along the way to improve communication with our international patients. Through this process, I have identified three strategies that have been very effective:

(1) View your culture from a newcomer’s perspective

. American Ways: A Guide for Foreigners in the United States

 by Gary Althen is a book designed for immigrants and explains the differences between the US and other global cultures that can lead to frustration and confusion on both sides. Reading about our own culture helps us to recognize key differences which may impact patient care and also help practitioners to maintain humility and prevent unhelpful stereotyping.

. In addition to using a qualified interpreter, clinicians can use open-ended communication and a “teach back” approach. Nurses understand these strategies by virtue of their training, but it is important for lay navigators and other nonlicensed healthcare staff to use these communication strategies as well when working with patients from other cultures. As a former interpreter in a healthcare clinic, I witnessed patients answering “yes” multiple times during conversations with physicians and realized that often patients would simply agree with the physician instead of actually respond to the questions.

To remedy this issue, we began asking open-ended questions, such as who, what, where, when, why, and how. We would ask patients to summarize their understanding in their own words by asking them to “teach back” to us. Using these strategies fortified our communication and relationships, improving patients’ understanding of their care plan.

(3) Assist non-English speaking patients with their written communications

. This is especially important for navigators working with patients experiencing financial barriers. It can be a daunting task to obtain completed patient grant applications or even a signature on a form from patients who cannot read English. Many have admitted to throwing away mail they receive when the envelope is not addressed to them in their language.

One strategy we have used successfully is to ask non-English speaking patients to call when they receive mail in order to examine it together. We have also asked our Vietnamese and Chinese patients to go to a local Asian community center to have their mail explained to them. These strategies have resulted in patients who have kept more of their appointments, signed and returned more forms, and alerted navigators when they have received bills they cannot pay. This strategy has also assisted patients in renewing food stamps and other forms of government assistance which prevented a lapse in their benefits.

As navigators, we can make a great difference in the healthcare of international patients. By working together, we can empower patients from other cultures to improve not only their access to care, but also their care experience and outcomes.

___________________________________________________________________________________

Jace Longnecker has been a lay navigator for more than 5 years, and cur&shy;rently works in that role at Northside Hospital Cancer Institute in Atlanta, Georgia. Debbie Bickes has more than 30 years of experience as an oncol&shy;ogy nurse serving in a variety of roles and is currently the CMS Program Coordinator at Northside.

Nurse Navigators

The fear of undergoing cancer treatment is universal. Imagine, however, how it would feel to have a medical team that cannot speak a word of your language or even pronounce your name.

Navigator Offers Strategies to Support Non-English Speaking Patients

In 2013, two-time Oscar winner Michael Douglas generated public interest in the rising problem of HPV- related oropharynx cancer when he revealed that his base-of-tongue cancer was the result of contracting human papillomavirus (HPV) through oral sex.

HPV is the most common sexually transmitted disease in the United States and can infect the oropharynx (tonsils and back of throat), anus, and genitals. Many types of HPV exist, with some types having no effect, whereas others cause cancer or warts. Oral HPV infection can lead to HPV-positive oropharyngeal squamous cell cancer after many years.

Researchers have identified over 170 types of HPV, more than 40 of which are typically transmitted through sexual contact. HPV is a DNA virus with over 100 different subtypes that infect the skin and the mucosa, with the most common being HPV 16 and 18.

Current estimates of the etiology of squamous cell carcinoma of the oropharynx indicate that 84% are related to HPV infection,

 a significant change from the prior decades of tobacco- and alcohol-related cancers.

HPV-related oropharyngeal cancer is now a well-defined entity with recognized risk factors that include young age, good performance status, male gender, nonsmoking and non-drinking status, basaloid tumor histology, and high-risk sexual behavior. The prognosis for these patients is believed to be better than that for patients who have non-HPV oropharyngeal cancer.

Recent reports suggest that HPV infection affects prognosis. Carole Fakhry et al reported the results of a prospective trial that HPV-related oropharyngeal cancer behaves in a different fashion, has a different response to therapy, is more sensitive to radiation-based therapies, and thus may require a different therapeutic approach compared with HPV-unrelated oropharyngeal cancer.

In 2015, approximately 45,780 people in the US (32,670 men and 13,110 women) will be diagnosed with an oropharyngeal cancer.

Oropharynx cancer ranks as the eighth most common cancer among men

An estimated 8650 deaths (6010 men and 2640 women) occurred in the year 2015 from an oropharyngeal cancer

By 2020, the annual number of HPV-positive oropharyngeal squamous cell carcinomas (OPSCC) (~8700 patients) will surpass the annual number of cervical cancers (~7700 patients) with the majority occurring among men (~7400). By 2030, OPSCC will likely constitute a majority (47%) of all head and neck cancers.

While some commercial tests are available in the dental community, the value of this testing as a screening tool is not clear. Testing positive on any given day for oral HPV does not prove persistence of infection. The HPV virus often will clear on its own and not cause any health-related problems.

The human papillomavirus frequently has no symptoms, and therefore it is easily and not knowingly passed from one person to another. At this time no studies have explored how oral HPV can be prevented. However, it is likely that condoms and dental dams, when used consistently and correctly, will lower the chances of giving or getting oral HPV during oral sex. More research is needed to understand how oral HPV is transmitted, how it can be prevented, and who is most likely to develop health problems from an oral HPV infection.

About 80% of population aged 14-44 have HPV exposure through oral sex with the opposite sex partner.1 The HPV vaccine prevents people from getting new HPV infections specific to the subtypes the vaccine covers. The vaccine will not help to clear an infection that is already present.

Three HPV vaccines have been licensed by the FDA since 2006. CDC recommends these HPV vaccines for routine use among girls and boys aged 11 or 12. HPV vaccines are administered as a 3-dose series with doses given at 0, 1-2, and 6 months. Bivalent, quadrivalent, and 9-valent HPV vaccine all protect against HPV 16 and 18, the HPV types that cause about 66% of cervical cancers and the majority of other HPV-attributable cancers in the United States.

The 9-valent HPV vaccine targets 5 additional cancer-causing types, which account for about 15% of cervical cancers. Quadrivalent and 9-valent HPV vaccine also protect against HPV 6 and 11, the HPV types that cause anogenital warts. The additional five types of HPV targets in 9-valent HPV vaccine account for a higher proportion of HPV-associated cancers in women compared with men. These HPV types can also cause cervical precancers in women. Therefore, the additional protection from 9-valent HPV vaccine will be of greater benefit to women.

It is believed that through utilization of the HPV vaccine we will see a significant decrease in the number of oropharyngeal carcinomas. Scientific research shows the benefits of HPV vaccination far outweigh the potential risks. More than 80 million doses of HPV vaccine have been distributed since the vaccine was introduced in 2006.

 The most common side effects associated with HPV vaccines are mild and may include pain, redness, or swelling in the arm where the vaccine was given.

Most HPV types infect cutaneous epithelial cells and cause common warts, such as those that occur on the hands and feet. Approximately 40 HPV types infect mucosal epithelial cells on the genitals and the mouth and throat. Persistent infections with high-risk (oncogenic) HPV types can cause cancers of the anus, cervix, penis, vulva, and vagina, as well as the oropharynx (defined as the back of the throat, including the base of the tongue and tonsils). The most common high-risk types are 16 and 18. More research is needed to understand all the factors leading to oropharyngeal cancers.

Patients with HPV-positive oropharyngeal cancer are approximately 10 years younger when compared with HPV-negative patients. Many of the patients seen with this disease are in their late 30s or early 40s. This difference in patient age has major implications in terms of performance status, comorbidities, and the ability to tolerate treatment, which can affect the prognosis.

HPV-associated tumors predominantly arise in the base of the tongue or the tonsillar region, although a small percentage of tumors at other sites are also HPV-positive. Why the oropharynx is more susceptible than other sites to HPV transmission is unclear. Similar to the cervix, the oropharynx offers easy access for infection. The tonsils contain deep invaginations of the mucosal surface believed to favor the capture and processing of antigens, which may facilitate viral access to basal cells.

Patients may present with one or more of the following symptoms: sore throat, difficulty swallowing, earache (referred via CN9 to tympanic nerve of Jacobson), painful swallowing, muffled (“hot potato”) voice (with extrinsic tongue invasion-T4a), hoarseness (with larynx invasion-T4a), trismus (with invasion of masseter or pterygoid muscle-T4), neck mass (up to 70% cLN+ on presentation), enlarged lymph nodes, and unexplained weight loss.

HPV-associated oropharyngeal cancer currently is staged using the same tumor, node, metastasis (TNM) staging system as for those with HPV-negative oropharyngeal cancers. However, given the differences in clinical presentation and the natural history of disease, the TNM staging system for HPV-positive disease is under review and may require modification.

Currently, regardless of whether the cancer was caused by HPV or smoking/alcohol, the treatment and perceived prognosis based on tumor staging has remained the same—even though patient outcomes vary considerably.

For example, a stage IV patient with HPV-related cancer has an 80% survival rate, whereas a stage IV smoking-related cancer patient has a 50%-60% survival rate; both are presently considered advanced stage—which is recognized as a life-threatening prognosis. Studies such as the ECOG 2399)5 have reported improved outcomes for the HPV-associated cancers, adding evidence that a new tumor staging model would help to separate patients with promising prognoses from those with negative prognoses to design the most appropriate treatment strategies for each group.

Dental Prophylaxis in Head and Neck Cancer

When the treatment for cancer of the head and neck requires radiation therapy, a thorough dental examination is required prior to radiation treatment. A dentist specializing in dental prophylaxis will complete a thorough screening, including radiographs to assess the health of the teeth and the jaw. Teeth in the field of the radiation should be extracted if gum depth is ≥5mm. Root canals in the field of radiation should be considered for extraction as well as impactions and large fillings or fractures. This screening can help patients avoid many complications and achieve optimal results.

During radiation treatment planning, it is very difficult to exclude the salivary glands from the radiation fields in the head and neck. Radiation therapy may affect the salivary glands, and the result is a change in the quantity and quality of the saliva. Saliva is important when discussing oral health, because it both lubricates the mouth and balances the mouth’s acidity, thereby preventing tooth decay. As a result of radiation, most patients experience dryness in the mouth, called xerostomia.

A certain amount of dryness will probably persist indefinitely after radiation therapy to the head and neck. The most common problem associated with dry mouth is rampant dental decay and periodontal disease. Another more serious effect of radiation is a decrease in the size and number of blood vessels in the area of radiation. This causes a decrease in the ability of irradiated tissue and bone to heal following surgery, injury, or infection, occasionally resulting in osteoradionecrosis.

Radiation therapy may cause some reactions or side effects. Acute side effects may include fatigue, skin irritation, sore throat/mouth, thick oral mucous, and loss of taste, change in appetite, temporary loss of facial hair, mucositis, and nausea /vomiting. Late side effects may include, fatigue, dry mouth, chronic swelling of throat, poor wound healing after trauma, dental extraction, difficulty swallowing, poor taste, trismus, loss of thyroid function, and fibrosis.

Head and neck cancer therapy remains a difficult challenge for most patients and is exacerbated by the toxicity associated with current treatments. Although most delayed side effects in the treatment of head and neck malignancies occur within the first 3 years after initiation of treatment, some may appear or progress much later, emphasizing the need for long-term follow-up.

Gloria Wood, BSN, RN, and Jennifer Cerar, RN, CRRN, are nursing specialists in the Radiation Oncology Program at Moffitt Cancer Center, Tampa, Florida.

Centers for Disease Control and Prevention. Human Papillomavirus. http://www.cdc.gov/std/hpv/.

Gillison ML, Broutian T, Pickard RK, Prevalence of oral HPV infection in the United States, 2009—2010. 

Ang KK, Harris J, Wheeler R, et al. Human papillomavirus and survival of patients with oropharyngeal cancer. 

Fakhry C, Westra WH, Li S, et al. Improved survival of patients with human papillomavirus-positive head and neck squamous cell carcinoma in a prospective clinical trial. 

Chaturvedi AK, Anderson WF, Lortet-Tieulent J, et al. Worldwide trends in incidence rates for oral cavity and oropharyngeal cancers.

Walline HM, Komarck C, McHugh JB, et al. High-risk human papillomavirus detection in oropharyngeal, nasopharyngeal, and oral cavity cancers. 

Lewis J, Thorstad W, Chernock R, et al. (2010). p16 positive oropharyngeal squamous cell carcinoma: an enitity with a favorable prognosis regardless of tumor HPV status. 

Huang S, Xu W, Waldron J, et al. (2015). Refining american joint committee on cancer/union for intentional cancer control tnm stage and prognostic groups for human papillomavirus-related oropharyngeal carcinomas. 

D’Souza G, Kreimer AR, Viscidi R, et al. Case-control study of human papillomavirus and oropharyngeal cancer. 

Feature Story

Nursing Considerations for HPV-Related Oropharynx Malignancies

It started with one oncology nurse’s inspiration—and a closet. That simple idea has grown into a “renewal room” on every clinical floor of the newly built inpatient tower at Cancer Treatment Centers of America (CTCA) at Midwestern Regional Medical Center, a place where nurses can retreat to relax, take a mindful pause, and find a few minutes for themselves.

The renewal room project was the inspiration of CTCA at Midwestern, board-certified nurse, Jillianne Shriver, BSN, RN, who after finishing her holistic training in 2013, searched for a space within the hospital where she could share with her coworkers what she had learned about the many benefits associated with nurses finding the time and space for self-care, self-responsibility, spirituality, and reflection. Even with space in high demand within the expanding hospital, Shriver discovered a spacious closet that could be repurposed, and the renewal room found its first home.

Now there are several rooms throughout the hospital, and they feature a massage chair, music and aromatherapy, yoga, journals, and inspiration books where nurses can leave thoughtful words of encouragement for their peers who come in later and may need a boost.

“It was important that we have a variety of options for nurses, so they could use what works for them to relax. To help nurses truly reconnect, we ask them to enter the room without their pagers and their phones, so there are no interruptions,” added Shriver.

Nurses can stay in the room for up to 15 minutes, and the initiative has proven quite popular. Shriver collected data when her initial “renewal room” pilot launched in May 2013, using a Likert scale to record nurse stress levels before entering the room and after they left: 96% of the nurses reported that their stress levels had dropped after utilizing the room, and within 3 months the room had been used more than 422 times. Shriver said the hope is that when nurses emerge from this brief respite, “they can have a clear mind and be more emotionally present to serve their patients and their families.”

 Institutional buy-in was essential to the project’s success, and Shriver credits the hospital’s nursing administration, which wholeheartedly backed her idea and understood its value in supporting an ethos of patient-centered care.

“If you want to provide an environment of healing and hope to your patients and families, you also have to provide that kind of environment to your employees,” explained Jacklynn Lesniak, MS, BSN, RN, senior vice president of Patient Care Services and chief nursing officer at CTCA at Midwestern.

Lesniak and colleagues had reviewed the research, which found a high rate of compassion fatigue among oncology nurses: “What [the research] found with compassion fatigue in a hospital setting was emotional exhaustion, deep personalization of their care, and a decreased sense of professional accomplishment.”

“We looked at those items and said, ‘wow,’” Lesniak continued. “As a Magnet-recognized hospital, we are a premier provider of nursing care and our patient satisfaction scores reflect our efforts; however, we knew we needed to elevate what we were doing, and really look at how we can provide tools and techniques for our staff to practice self-care.”

The right placement of the rooms was essential, Lesniak stressed, so that a minimum of travel time would be required for busy nurses. With that in mind, a designated space on each unit close to where nurses work was built into the plans for the new inpatient tower which opened in November 2015.

Conceptually, Lesniak added, it’s important that nurses don’t think of the renewal rooms as “just another break room.”

“Our team is very supportive on the floors,” concurred Shriver. “We have unit shift leaders who are able to read each other and will say, ‘You look like you need to take a few minutes. I’ll take your phone. I’ll watch your patients. Go take a few minutes and restart, recharge, refresh, and do whatever you need to do for yourself.”

It started with one oncology nurse’s inspiration&mdash;and a closet. That simple idea has grown into a “renewal room” on every clinical floor of the newly built inpatient tower at Cancer Treatment Centers of America at Midwestern Regional Medical Center, a place where nurses can retreat to relax, take a mindful pause, and find a few minutes for themselves.
 

More Than a Break Room: A Quiet Place to Recharge and Renew

When Harold P. Freeman, MD, began visiting American cities more than 25 years ago to learn about the effects of race and poverty on cancer outcomes, few people were talking about disparities in access and care.

By the end of his seven-city tour, Freeman, who was then president of the American Cancer Society, not only had enough testimonies from patients with cancer and their families to form a groundbreaking portrait of the challenges that poor people face in obtaining care, he also had a sharper vision of the patient navigation concept that he would pioneer.

Throughout a long and storied career in medicine, Freeman has met five US presidents, including three whose cancer panels he chaired, worked alongside celebrities such as LeBron James and Kareem Abdul-Jabbar, and was so well known that then-candidate Barack Obama remembered the first time he met Freeman better than Freeman remembered meeting him.

His efforts have been recognized with a Lasker Award for public service, the American Cancer Society’s Medal of Honor, a special award from the American Society of Clinical Oncology, and a host of other honors. Last year, Freeman won a Giants of Cancer Care Award in the Community Outreach/Education category.

Through it all, Freeman has been motivated by the needs of the patients that he met in his daily practice, starting in Harlem in the late 1960s, and has not stopped focusing attention on his core mission of improving access to care for people regardless of economic status.

“You shouldn’t die because you are poor, from cancer or anything else,” he said. “Patient navigation is one of those elements that, in my view, tends to temper the point that we have great systems, wonderful specialists, powerful cancer centers, and we say we can give the best care in the world—but they don’t say what they should say, which is, ‘If you can pay for it.’”

At the age of 83, Freeman spends most of his time teaching and promoting his signature idea of patient navigation—systems through which trained nonprofessionals and oncology care providers help patients with cancer to obtain the care they need in timely fashion throughout their journey. The Harold P. Freeman Patient Navigation Institute in New York City trains nurses and other healthcare providers and community members in how best to guide patients through the continuum of cancer care, from outreach efforts to the finding of abnormalities to timely diagnosis and treatment. Individuals who complete the 2-day training program receive a certificate in patient navigation.

Although Freeman developed the concept for patients with cancer, the institute has expanded the model to include managing individuals with other chronic conditions, such as diabetes, heart disease, infectious diseases, and mental health conditions. In essence, patient navigation is about helping patients overcome barriers to care, whether they are complex barriers involving fear, knowledge, and a lack of insurance coverage or easier-to-solve obstacles like getting to appointments.

“Whatever the barrier is, it’s the navigator’s job to solve it, so the patient can move in a timely way from the point of finding to diagnosis and treatment,” Freeman said. Beyond that premise, navigators are trained to “virtually integrate” the fragmented healthcare system for each of their patients, he said.

Under Freeman’s concept, the level of professional training that a navigator needs depends on the stage at which he or she would be helping patients; oncology nurse navigators, for instance, would step in to assist patients in understanding the implications of their diagnosis and the recommended treatment plan.

Freeman initially developed his navigation ideas to help people without economic resources gain access to care. A 2005 federal law that established demonstration programs in medically underserved communities help foster his concepts.

Since then, elements of patient navigation have been embraced by cancer centers throughout the country. The American College of Surgeons has made a patient navigation process part of its accreditation standards for hospital cancer programs.

Freeman believes that the patient navigation system is particularly helpful in guiding patients through the highly specialized healthcare system. “We don’t have a system that is necessarily friendly to the movement of the individual through a complex journey, including things that have to happen in the community early on, such as the outreach element, and then the clinical element getting from finding to treatment and followed by supportive care back in the community,” said Freeman. “We’re concentrating on specializing.”

However, funding to help healthcare providers with the cost of patient navigation is insufficient, Freeman notes. Although the Affordable Care Act, signed into law in March 2010, extended funding for one federal initiative, it did not make navigation a billable service.

“I think there is a lot of evidence that patient navigation helps patients. The next set of questions is, at what cost? I believe the evidence is coming in more and more than not only is it a good thing related to patient outcome, because you’d have one-on-one attention to a person moving through a complex system, but it appears that evidence is coming that it is saving resources and saving money,” Freeman said.

For healthcare providers, the benefits of having trained navigators may include increased patient retention, diagnostic, and treatment resolution rates, as well as improved organizational efficiencies—such as boosting the rates of patients who actually show up for their appointments&mdash; thus preventing lost revenues and ultimately increasing revenue.

Interestingly, Freeman notes, the positive benefits of patient navigation have been scientifically proven after the program was initiated in response to the needs of patients in a community, reversing the standard sequence in which evidence is required before ideas are adopted. “The practice preceded the evidence and to me that’s kind of an intriguing change of the usual course of things,” said Freeman. “If patient navigation came out of a neighborhood and a community and then was later evaluated and proven, for the most part, to be a sound concept, I kind of wonder whether there may be a lot of other things that are going on and being practiced around parts of the country or the world that never get a chance to be evaluated and valued.”

When Freeman reflects upon the trajectory of his life, he often thinks of it in terms of Einstein’s theories about the nature of existence as part of a space—time continuum.

“What you see depends on where you stand,” Freeman explains. “That is a good way to look at my life because I stood in a world that made me see things differently. I came up in a world of people having problems—segregation, racism, and there was poverty.

“Then I got a chance to be educated and then I have a chance to reflect back on, not just my little part of the world where poor black people in a particular community were having problems, but also sought to understand the universal meaning of these circumstances,” said Freeman.

As an important recognition of his contributions, Freeman was named a Lasker laureate for “enlightening scientists and the public about the relationship between race, poverty, and cancer.”

Freeman’s beliefs were framed by a sense of pride and responsibility stemming from his family history. His great-great-grandfather was a plantation slave in North Carolina who bought his freedom in 1838 with $3000 saved from carpentry work done on the side. He called himself “Freeman” when he became free. His great-granduncle, Robert Freeman, the son of a slave, graduated from Harvard Dental School in 1869, becoming the nation’s first black dentist and also the grandfather of Robert Weaver, the nation’s first black cabinet member. Like Freeman, his grandfather was a physician.

“I’m looking at an ancestor who came out of slavery and raised a family, where his son became a dentist and who owned a home in Washington, DC, by 1845, seven years after coming out of slavery,” Freeman said, explaining where he gets his inspiration. “If he did that, I’m challenged to do a lot more. So that’s a good thing for me to think about.”

Freeman was 13 years old when his own father—who put himself through law school by working extra shifts at night&mdash;died of testicular cancer. His mother, who was a schoolteacher, struggled financially to raise her three sons. Schools were still segregated when Freeman was growing up, but he was able to attend the Paul Laurence Dunbar High School, an academically elite institution for black students. He also earned a scholarship to The Catholic University and played on tennis and basketball teams. Freeman later qualified to play in US national tennis championships for 3 years in the 1950s and was later inducted into the Athletes Hall of Fame at Catholic University.

After obtaining his medical degree from Howard University in Washington, DC, he went to New York to train in cancer surgery at the renowned Memorial Sloan Kettering Cancer Center (MSK) and to work in the predominantly poor and black community of Harlem, where he believed he could make a difference.

In 1967, Freeman became an attending cancer surgeon at Harlem Hospital, ready to put his skills and education to work. Yet he found that patients, particularly women with breast cancer, were arriving in his clinic with disease too far advanced for effective treatment, including “some women who came in at a stage in which cancer had replaced the breast,” Freeman recalled.

“That was a turning point for me—women coming in that late,” he said. “So I began to look at who these people were and what were their circumstances. And it turned out that these women were all poor and all black. So I began to look at the meaning of poverty and race.”

Realizing that a lack of access to early detection including mammograms was part of the problem, Freeman set up free breast cancer screening clinics in Harlem, first pushing the rules to offer the service on Saturdays at Harlem Hospital and later obtaining funding for off-site breast cancer screening. However, although support for such community-based screening programs increased in New York state, Freeman knew that impoverished patients faced many more barriers to care.

Through his work in New York City, Freeman saw those needs firsthand. He served as director of surgery at Harlem Hospital from 1974 to 1999, when he also was a professor of clinical surgery at Columbia University College of Physicians and Surgeons. He was becoming a leading authority on the interrelationships between race, poverty, and cancer at a time when such matters were not commonly discussed. In the late 1970s, he became a member of the American Cancer Society’s (ACS’s) board of directors; he then led the society’s initiative on cancer among the nation’s poor. In 1988, he was named the ACS’s national president.

Freeman also has served as chairman of the President’s Cancer Panel, on which he worked under presidents George H. W. Bush, Bill Clinton, and George W. Bush. He is also the founding director of the National Cancer Institute’s Center to Reduce Cancer Health Disparities.

Amid such a record of achievement, Freeman acknowledges a sense of tremendous accomplishment— but does not attribute the credit solely to his own efforts. “Things don’t happen always by how hard you work,” he said. “You also have to be lucky.

“Some of this is based on working hard and having the right idea,” Freeman added. “Some of it is related to what happened to allow you to do what you do. I did some hard work, but I got promoted to places of authority that allowed me to say to a broader audience what my thoughts were.” Freeman credits two people in his life for helping him reach those heights. The late Arthur I. Holleb, MD, a surgical oncologist at MSK hailed for his efforts to promote Pap smear screening for women, encouraged Freeman to pursue his career at that institution. Holleb later helped Freeman become a board member and president of the ACS. Then there’s Freeman’s mother, Lucille Thomas Freeman, who encouraged him not only to obtain an education and play tennis, but also raised him as a devout Catholic.

“I wouldn’t say I am very religious at this point” but the influences of his faith are ingrained in him, said Freeman. “When I was young, my mother would say you have to drink milk. It wasn’t always a quart of milk, but I had to drink a lot of milk every day. At a certain point when I became 13 or 14, I would tell my mother I don’t want to drink milk that much anymore. She was OK with that—she said the calcium is in your bones.

“I think you can stop drinking milk at the age of 14 and still have strong bones,” he continued. “I think that’s true of religion and other things that happen—that’s the way I think about it. How you are raised becomes so critical in what you become with respect to being fair, being concerned about people who don’t have resources, coming out of a segregated life, and finding your way to believe that you should care about everybody who is disadvantaged.”

These are the values that have influenced Freeman’s life and that have made a compelling difference in his work.

Harold P. Freeman, MD, who developed the patient navigation concept now used widely in cancer care, was honored in the Community Outreach/Education category with a 2015 Giants of Cancer Care® award, a program that the Intellisphere® Oncology Specialty Group launched to honor leaders in the field.