The American Cancer Society estimates that almost 14.5 million cancer survivors are alive in the United States today. By 2024, the number of survivors will grow to almost 19 million. Many factors contribute to this growing number, including earlier diagnosis, improved treatments, and better follow-up care.

But are cancer survivors getting the specific care they need?

From Cancer Patient to Cancer Survivor: Lost in Transition

 recognizes that the current US healthcare system does not often deliver the comprehensive and coordinated follow-up care that cancer survivors require. The reports calls on providers not only to arrange for surveillance for cancer recurrence but also offer holistic care addressing chronic effects of cancer and treatment side effects, monitoring for and preventing late effects like heart disease, and promoting a healthy lifestyle.

Because nursing has a significant role on the “front lines” of cancer care both in hospitals and ambulatory settings, nurses must serve as a source of knowledge and advocacy for cancer survivors. One specific area that requires attention and research is cardiac health in cancer survivors.

Cancer survivors have nearly an 8-fold increased risk of death due to cardiovascular disease compared with the general population. Potential mechanisms include the cardiotoxic effects of chemotherapy and radiation, and modifiable risk factors related to cardiac health including inactivity, poor diet composition, and excess weight. In addition, cancer survivors experience disease- or treatment-related symptoms that persist post-therapy which are often barriers to an active lifestyle.

Both radiation and chemotherapy can result in cardiotoxicity. Pericardial effusion, pericardial constriction, myocardial dysfunction, and heart failure may be serious clinical conditions encountered among cancer survivors. Effects of chest radiotherapy are manifested as coronary artery disease and valvular dysfunction.

Chest irradiation can also contribute to cardiac dysfunction after the myocardium gets exposed to certain dose levels of radiation. Specific to chemotherapy, anthracyclines (such as doxorubin, epirubicin, liposomal doxorubicin, or mitoxantrone) are major contributors of cardiomyopathy. Unfortunately, these cardiotoxic side effects from treatments are often exacerbated by coexisting conditions like hyperlipidemia and hypertension.

Carolyn Reilly, an assistant professor at the Nell Hodgson Woodruff School of Nursing at Emory University, recently completed a study to describe the prevalence of cardiovascular disease in lymphoma survivors.

Participants (N = 31) in this cross-sectional, correlational study were a mean age of 47.6 years; most were males (55%) and white (84%). Participants averaged 5 years since lymphoma treatment. Routine laboratory tests and fasting lipid levels, coronary artery calcification computed tomography, echocardiography, and patient-reported outcomes were measured.

 Subclinical disease was detected in 35% of the sample, with 28.6% of the women having diastolic dysfunction. Women scored lower than men in health-related quality of life measures and had more symptoms (bloating and diarrhea). Of those with subclinical disease, women were more likely to re&shy;port pain, numbness in hands or feet, and shortness of breath.

These results demonstrate the need for assess&shy;ment of symptoms that could uncover subclinical disease and lead to timely referral for follow-up and treatment.

Nurses can promote heart health by teaching their patients about the benefits of exercise. Increasing physical activity can decrease the modifiable cardiac risk factors of inactivity and excess weight.

The best treatment identified to reduce fatigue and to improve psychological distress in cancer survivors is increased physical activity. Regular physical activity prolongs overall survival and dis&shy;ease-free intervals, improves quality of life, mood, fitness, physical function, and decreases fatigue.

More work is needed to determine the best ap&shy;proach to increasing physical activity in cancer sur&shy;vivors. Information is needed to determine the spe&shy;cifics of interventions for cancer survivors including the best type, duration, frequency, and intensity.

A recent Cochrane review of 14 randomized clinical trials of exercise interventions in sedentary cancer survivors

 found that although none achieved an adherence of 75% or greater to the recommended 150 minutes of moderate to strenuous aerobic activ&shy;ity per week, three did achieve 75% adherence to a lower goal, resulting in improved exercise tolerance.

The most successful interventions involved com&shy;ponents such as setting program goals, encouraging practice and self-monitoring, and teaching partic&shy;ipants to use skills learned in supervised exercise environments in other areas of their day-to-day life.

Additional research is needed to determine the best approach to deliver comprehensive and coor&shy;dinated follow-up care for cancer survivors. Assess&shy;ment of cardiac risk is needed in future programs, along with evidence-based interventions to decrease modifiable risk factors. Nurses as researchers, cli&shy;nicians, advocates, and teachers are in a prime posi&shy;tion to lead these efforts. Cancer survivors need our continued care!

Institute of Medicine and National Research Council. 

. Washington, DC: The National Academies Press; 2005.

Reilly C, Esiashvili N, Parashar S, Higgins M. Subclinical cardiovascular disease in lymphoma survivors by gender [published March 23, 2016]. 

Bourke L, Homer KE, Thaha MA, et al. Interven&shy;tions for promoting habitual exercise in people living with and beyond cancer. 

Articles

Partner Perspectives

The American Cancer Society estimates that almost 14.5 million cancer survivors are alive in the United States today. By 2024, the number of survivors will grow to almost 19 million.

Heart Health and Cancer Survivors

What constitutes a “good death” or “successful dying” as it has been called? Clinicians I’ve asked have had to stop and think about this. Most responded by describing the opposite—“bad deaths” or dying scenarios that were distressing to the patient, family, and/or healthcare providers.

Researchers in the Department of Psychiatry at the Moores Cancer Center in La Jolla, California attempted to determine what constitutes a good death by conducting a literature review of qualitative and quantitative studies that defined or described a good death. Most of the studies were conducted in cancer treatment settings in the United States. Thirty-six studies met eligibility criteria, and 11 core themes of a good death were identified.

Not surprisingly, they included preferences for a specific dying process, pain-free status, religiosity/spiritualty, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with healthcare providers, and “other.” Patients rated their wishes (preferences for dying processes), comfort (pain-free status), and emotional well-being as the most important characteristics of a good death. In contrast, family members rated life completion, quality of life, dignity, and presence of family as the most important components of a good death. The researchers noted that this disconnect between patient and family perspectives creates divergent perspectives on end-of-life care.

We’ve all seen this happen. A patient wants to discontinue treatment while the family wants to push on. A patient’s daughter who lives far away rushes to the bedside of her dying father. Clearly, patients and family members have different needs and wishes at the end of life, and clinicians need to respond accordingly. It’s not surprising that these conversations have been called “difficult conversations,” and unfortunately, for some patients, these conversations never occur. Not acknowledging or addressing the end-of-life wishes of both the patient and the family further the disconnect between these two groups, and reduce the likelihood of a good death.

The researchers noted that we often talk about personalized medicine and personalized care; however, we should also talk about personalized death. I would also add that these conversations need to be ongoing; all too often we ask patients about their wishes at one point in time (eg, when advance directives are being discussed) and fail to subsequently further discuss their wishes as their clinical status changes. It’s only when death is likely—or imminent&mdash;that we again talk about end-of-life wishes.

These conversations also tend to center around the patient’s wishes, which may align with the family’s wishes, but often do not. Including family members in these discussions is paramount.

The study’s findings also suggest that separate conversations are in order. For instance, conversations with the patient might focus on how and where the patient wishes to die, and include a discussion about pain control. In addition, the patient’s emotional well-being needs to be frequently assessed, with action taken when indicated. Conversations with family members might include asking about the patient’s life story (eg, life completion), how they view a “good death” for the patient, and their desired level of involvement during the patient’s final months and days.

Psychologists and philosophers have sought to answer the question of “what do people want in life?” For most people, it’s significance and contribution, and making a difference in the lives of others. To this end, we as clinicians can initiate conversations with patients about their life stories and how they would like to be remembered. We can engage the family members in these conversations, and in doing so, may rekindle memories long ago forgotten by the patient.

We’ve all too often witnessed the “bad deaths,” the ones that failed the patient and family. Now that more is known about a good death from both the patient’s and family’s point of view, we can apply this knowledge in daily practice and hopefully, help ensure a good death for all of our patients.

Meier E., Gallegos JV, Thomas LPM, et al. Defining a good death (successful dying): literature review and a call for research and public dialogue. 

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

Nurse's Notes

What constitutes a “good death” or “successful dying” as it has been called? Clinicians I’ve asked have had to stop and think about this. Most responded by describing the opposite&mdash;“bad deaths” or dying scenarios that were distressing to the patient, family, and/or healthcare providers.

A "Good Death": Is There Such a Thing?

Every year, when our editors return from the Oncology Nursing Society (ONS) Congress, they remark on how inspiring and informative this event always proves to be, as thousands of oncology nurses gather to exchange insights and share their research, all with a single purpose in mind: to improve the lives of people coping with cancer and the caregivers who love them.

This year in San Antonio was no exception, as our team of editors from 

 magazine attended poster and podium sessions where nurses shared clinical practice tips and findings from their research projects—many of which began with one nurse simply identifying a problem that needed solving to improve patient outcomes.

, we report on a number of approaches that are backed by the evidence and thus “green-lighted” for inclusion in the ONS symptom management toolkit, to help patients deal with the stress and anxiety that accompanies a cancer diagnosis. We also hear from nurses who have found ways to: improve pain medication dosing, monitor for side effects of targeted therapies, proactively monitor for complications like portal vein thrombosis, and prevent dangerous falls in the cancer population.

Our editors also had the honor of interviewing dozens of oncology nurses at ONS about their practice challenges. They shared peer insights on such vexing issues as chemotherapy-induced peripheral neuropathy, biopsy procedure—related pain, and the insomnia that often troubles patients, survivors, and their caregivers. You can find these interviews and more on our website, Nursing.OncLive.com.

 sat down with one of the profession’s most compelling thought leaders, Theresa Brown, PhD, RN, who left her career as an English professor to become a nurse. It didn’t take long for Brown to find a home in oncology, where she now specializes in palliative care and hospice. Brown, a celebrated author and New York Times columnist, shares with us why she finds working with patients, often at the end of life, so gratifying—and inspirational.

 editor-in-chief Lisa Schulmeister, MN, RN, ANCS-BC, FAAN, raises the question in her column this month, “Is there such a thing as a ‘good death?’” Both Brown and Schulmeister would argue that there is, but it depends upon honoring patients and their families—their unique life stories and their wishes for their final days, whatever those might be.

We hope that you find these articles informative and inspiring in your daily practice, and as always, thank you for reading.

From the Chairman

Taking the Lead to Solve Problems and Improve Patient Care

Health Volunteers Overseas (HVO), an international medical education organization, provides opportunities for oncologists, oncology nurses, and others with oncology expertise to strengthen the care of people with cancer treated at medical centers in low-resource countries.

By volunteering for HVO’s education and training programs, oncology professionals share their medical expertise and build long-term, supportive relationships with clinicians in these countries. HVO pairs eligible oncology professionals with a medical center whose needs match the expertise of the volunteer, and volunteers spend 1 to 4 weeks onsite.

During that time, they teach and train staff, residents, and students, and gain insight into the center's cancer management needs and challenges. Volunteers must be appropriately trained and credentialed healthcare professionals who specialize in oncology, such as physicians (medical, radiation, surgical oncology, among other specialists), laboratory professionals, and nurses.

There is currently a need for oncology nurse volunteers (as well as pathologists and surgical oncologists), and more information can be found at 

International Cancer Corps: Oncology Nurse Volunteers Needed

Change is the one word that describes an immediate result of a cancer diagnosis. A patient’s world can be turned upside down, and they could end up facing obstacles including dietary changes, role changes within their family, and even changes in their activities of daily living. They have to think about and plan for the effect of the diagnosis on every aspect of their lives. Certain tasks that once were routine can become obstacles, creating even more stress.

As a lay navigator, I have found that one of the greatest joys I have been able to experience has been when I find and offer a patient a resource which not only works for them, but gives them an emotional boost that can make all of the difference when facing what is often an overwhelming disease. The turnaround in a patient’s attitude and emotional state not only brightens their day, but also reminds me of why I am so passionate about helping patients overcome barriers. It’s inspiring to see how offering resource assistance can make a huge impact on the patients—not only emotionally, but often physically as well. Sometimes resolving the barrier can be a game changer when I am able to assist them with access to care or ease of receiving their treatment.

One patient that comes to mind is Patricia. Patricia was at an all-time low when she was first referred to me. She had recently been diagnosed with colon cancer, and it not only was affecting her emotional state, as she had to relay the news to her daughter and church family, but also was affecting her day-to-day life. Transportation, finances, getting groceries, housework, and fear of “overwhelming” her friends and family were only some of the struggles she expressed to me when I began working with her. As I was going through resource options to help Patricia, I heard her anxiety, and I was determined to help in identifying resources which might assist in decreasing some of the distress that she was experiencing.

I knew that the task would be challenging. Some of the hurdles we face in helping patients can include extensive resource investigations and evaluation, hoping a particular grant continues to have available funding, and even dealing with insurance companies. Patricia’s barriers were not resolved overnight, but with assistance from her medical oncologist office social worker, I helped Patricia apply for resources to assist in resolving some of the financial and transportation barriers she was now facing. Patricia was very grateful for this assistance, but I knew that housework and her lack of energy were still a huge burden for her as she had begun treatment for her colon cancer.

Patient’s “Game-Changer”: Housework

The “game changer” for this patient was her barrier with housework. Patricia explained how important having a clean house was for her. She explained to me that when her house was dirty, she simply could not relax. She related that she was out of energy after her chemotherapy and simply could not do her day-to-day tasks which increased her anxiety and stress. She also stated that she did not want her friends from church to come by anymore, as she was too embarrassed to open her home to anyone, and that this was taking a toll on her lifestyle. 

I contacted a housecleaning resource who arranged for free services for Patricia. After the first time her house was cleaned by the service, her attitude changed drastically. She seemed happier, uplifted, and told me, “I hit the jackpot!” after having her home cleaned the first time. She described it to me as a blessing out of the blue, and stated that it was the energy boost that she needed. She related that the cleaning company not only made her house “spotless” but also gave her a gift of an aromatherapy candle. She said that she will never light it, as it is her keepsake to remind her of the gift and the effect it had on her.

Another example involved a patient named Mary who was diagnosed with breast cancer and anxiously going through physical changes as she began her chemotherapy treatments. When I first spoke with her, she explained that she didn’t even recognize who was staring back at her in the mirror due to the amount of hair she was losing, and that it was hard for her to leave the house without the whole world knowing that she was sick with cancer.

 She began to neglect her supportive friends and stopped going to social gatherings, as she “didn’t want to draw attention or sympathy to herself.” I worked with her on options and different programs that would help her gain confidence in her appearance, but her overall concern was financing a wig or head scarf. We went through several different resources, but she was still struggling in finding “the” head coverings that made her look and feel like herself again.

Finally, after much research, I found a resource that assisted breast cancer patients with free headscarves as long as they met certain qualifications. Mary really liked this alternative to a wig, and stated that it would even be warmer for her as she underwent her chemo appointments, as she was also on blood thinners and got cold easily.  She was able to choose her favorite type, style, and color. She stated that she finally had control over something in her life again and was happier with herself. Although this was not a wig like she was hoping to find, this relatively simple solution caused a huge turnaround in her emotional state. She began to visit with her friends again and was able to resume her day to day activities again.

Patricia’s “boost” that she received from the free housecleaning resource, as well as Mary’s turnaround in control of her appearance not only lifted their spirits, but also served as an inspiration to me in my role as a navigator. Seeing these patients’ changes showed me that the navigator’s role is an important one for patients with cancer. Providing extra help and finding resources out to patients and their caregivers allows us to not only support, but also to empower, patients throughout their cancer journey.

Cancer Care Liaison at Northside Hospital Cancer Institute in Atlanta, Georgia.

Nurse Navigators

Change is the one word that describes an immediate result of a cancer diagnosis. A patient’s world can be turned upside down, and they could end up facing obstacles including dietary changes, role changes within their family, and even changes in their activities of daily living.

May 2016

Heart Health and Cancer Survivors

A "Good Death": Is There Such a Thing?

Taking the Lead to Solve Problems and Improve Patient Care

International Cancer Corps: Oncology Nurse Volunteers Needed

How Even Small Changes Can Ease a Patient's Journey