Empowering the Caregiver: The Challenges, Discoveries, and Rewards

At a symposium held in conjunction with the Twenty-Seventh Annual Congress of the Oncology Nursing Society, healthcare professionals, patients with cancer, and caregivers alike came together to provide insights into strategies to empower caregivers. Learning objectives included identifying factors related to the patient with cancer that affect the caregiver role, identifying available resources for caregiver education and support, discussing the role of the oncology nurse as a resource for caregivers, and summarizing the status of employer support for the caregiver.

This program was supportedby an educational grant from Ortho Biotech Products, L.P.

Speakers

Caregiving: Issues and Challenges  

As changes in the healthcare system continue, family caregivers are shouldering more of the responsibilities for the care of persons with cancer. “Oncology nurses can play a key role in caring for the patient with cancer by providing their expertise and guidance in the selection, training, and support of the patient’s caregiver,” said Gary S. Wolfe, RN, CCM, Case Manager, Private Practice, Editor-in-Chief, CareManagement, Salinas, California.

Selecting and Training the Caregiver
The caregiver of a person with cancer is typically a nonprofessionally trained family member or friend, often a spouse. While facing the effects and challenges of caregiving, a caregiver must possess a number of important qualities, including knowledge and skills (Table 1). “Oncology nurses can make an enormous difference in the lives of the patient and caregiver, by ensuring training of the caregiver that is individualized, practical, supportive, and offered in various formats [written, video, online]. Effective training enhances not only the caregiver’s knowledge and skill, but also his or her confidence and sense of empowerment,” Mr. Wolfe said. While the physical aspects of caregiver training are many, some of the main areas of symptom management include fatigue, pain, nutrition, and immobility.

Fatigue
While 76% of patients with cancer consistently experience debilitating fatigue, 49% of caregivers reported reducing work hours, accepting fewer job responsibilities, and taking time off to care for a fatigued person with cancer. “While the underlying causes of fatigue in persons with cancer may vary, the most common cause is anemia,” Mr. Wolfe noted. Anemia can be successfully managed by monitoring and maintaining hemoglobin levels near 12 g/dL. Treatments to help maintain this hemoglobin level include the use of epoetin alfa or, in cases of severe anemia, blood transfusion. Caregivers can assist patients with fatigue by keeping a detailed symptom journal, ensuring regular exercise when appropriate, providing a balanced diet, taking patients to a fatigue support group, and informing the patients’ physician to ensure that the underlying cause of fatigue is assessed and treated.

Pain
“The biggest barrier to effective pain management is the belief that patients with cancer will become addicted to or build too great a tolerance to pain medications,” said Mr. Wolfe. Patients and caregivers need to be aware that true addiction to pain medications is rare in persons with cancer. Caregivers can help to manage the patients’ pain by administering pain medications as prescribed, around the clock and as needed; by maintaining a symptom journal; by using nonpharmacologic methods, such as relaxation or distraction; and by being a strong patient advocate and ensuring that the physician is addressing the patients’ pain management needs.

Nutrition
Changes in nutrition intake may occur in persons with cancer because of the disease, its treatment, or anxiety and depression. To ensure proper nutrition, caregivers need to notify the healthcare team of any changes, gradual or sudden; try serving frequent smaller meals with bland, carbohydrate-rich foods; ensure protein needs are met; have the patient evaluated by a dietitian; and be creative in putting together a nutrition plan in response to individual patient needs.

Immobility
The reasons for immobility in persons with cancer vary. For patients who are having difficulty with mobility, caregivers can assist by having the patient evaluated by occupational and physical therapists, helping the patient to exercise as appropriate (can increase energy level), helping the patient to conserve energy, and ensuring a safe home environment to avoid falls and other accidents.

In addition to these symptom management concerns, caregivers must be trained in several other areas, including bathroom and personal care skills, adherence to medication schedules, knowledge of the disease process and medications, emergency resources, home adaptation, and spiritual and emotional needs.

Supporting the Caregiver
Given the enormous responsibility and expectations placed upon the caregivers, they can become overloaded, experiencing sleep disorders, marital problems, reduced employment, social withdrawal, as well as feelings of guilt, anxiety, fatigue, and depression. “Oncology nurses can be alert to these issues, and help the caregiver to set realistic expectations of caregiving,” said Mr. Wolfe. Finally, oncology nurses can help caregivers to identify and utilize their own sources of support by contacting other friends or family to assist, utilizing church and other community nursing programs, renegotiating with insurance agencies for home health aide, seeking emotional or spiritual counseling, and making time for themselves.

“Taking these steps, caring for and empowering the caregiver, ultimately results in better care and empowerment for the patient with cancer,” Mr. Wolfe concluded.

Empowering the Employed Caregiver

In addition to the responsibility of caring for the person with cancer, caregivers often must take on new roles in the home setting and still provide financially for the family. “Oncology nurses can help ease the burden of employed caregivers by guiding them in negotiating with their employers, assisting employers in developing supportive resources, and advocating for national and state policies that support caregiving,” said Kathi H. Mooney, RN, PhD, AOCN®, Program Chair, Professor, University of Utah College of Nursing, Salt Lake City, Utah.

Assisting Caregivers and Their Employers
Cancer is a disease that affects not only the patient, but the patient’s whole family. The impact of cancer and the need to provide caregiving to the person with cancer is felt in every area of life, with one important area being that of the caregiver’s workplace. “While caregivers struggle to stay employed and maintain career goals, they face many challenges, including difficulty concentrating while thinking of their loved one at home, needing to take time off, or needing more flexibility in the hours they work,” Dr. Mooney noted. However, employers wish to ensure employee productivity, maintain continuity of product or service, and avoid setting precedents that may be exploited by other employees. “Oncology nurses can assist in easing the tension between the employed caregiver and the employer by coaching caregivers in the important questions to ask their employers, and by helping employers to identify or develop support resources for their employees,” Dr. Mooney explained. Indeed, the need to address caregiver issues will only grow over time, as the U.S. population ages, “sandwich” generations work to support both parents and children, and the shortage of healthcare workers expands.

Identifying Sources of Employer Support
In pursuing assistance from their employers, caregivers may wish to ask about benefits provided both by law and through assistance programs provided voluntarily by employers. First, the federal Family and Medical Leave Act (FMLA) requires employers with 50 or more employees to afford employees the right to a leave of absence for medical or family healthcare reasons, without losing their jobs. The allowed leave is up to 12 weeks/year and is unpaid; however, healthcare benefits are maintained during this time. Eligible employees must have been employed for and worked a minimum of 1250 hours over the past 12 months (Table 1). “Oncology nurses may wish to ensure that caregivers meet the eligibility criteria before advising them of FMLA benefits, and inform them that their employers may require certification to verify the medical condition,” Dr. Mooney said. In addition, oncology professionals and caregivers need to be informed as to their own state law, as employers are required to comply with whichever law provides the greatest benefits. Second, many employers voluntarily offer human resource programs for employees in special need. Such programs, designed to retain both continuity of the workforce and financial health, may provide caregiver employees with added benefits, such as flexible work schedules, counseling or case managing assistance, and unused benefit-time donation from other employees.

“Oncology nurses can play a key role not only in helping caregivers negotiate with their employers, but also in contacting employers directly. In contacting the individual employers of their patients’ caregivers specifically or their community businesses in general, oncology nurses can effectively advocate for and assist in the development of supportive service programs that will benefit both employers and employees, and ultimately patients with cancer,” Dr. Mooney concluded.

Table 1. Details of the Family and Medical Leave Act

• Federal law, passed in 1993
• Provides employees the right to take a leave of absence to manage a medical condition or to meet family healthcare responsibilities, without jeopardizing their employment
• Requires that healthcare benefits are maintained during the leave
• Provides up to 12 weeks of unpaid, job-protected leave per year
• Applies to companies with 50 or more employees
• Applies to employees who:
  – Have been employed for at least 12 months
  – Have worked at least 1250 hours over the past 12 months
  – Work at a location with 50 or more employees within 75 miles
• Employer may require certification to show employee’s or employee’s family member’s condition
• Employer must follow FMLA or state law, whichever provides greater benefits
• Employer must comply with a collective bargaining agreement

Perspectives of a Patient and Caregiver Team

“I am happy to be here among oncology nurses tonight, but then 9 years after being diagnosed with advanced ovarian cancer, I am happy to be anywhere,” Joan Sommer, rehabilitation nurse and survivor of ovarian cancer, announced to symposium attendees. Ms. Sommer and her husband and caregiver, Joe Sommer, of Rutherford, New Jersey, told their family’s story of living with cancer and emphasized the need for resources and support for family caregivers of persons with cancer.

Facing Advanced Ovarian Cancer
As a full-time nurse, wife, and mother of 8-year-old and 4-year-old children, the last thing Joan Sommer expected to hear upon the delivery of her third child was, “You have a healthy new daughter and you have advanced ovarian cancer.” Yet, immediately after the cesarean section, Ms. Sommer was undergoing surgery to debulk the stage IV tumor, while her husband was waiting in shock and fear that his wife would not make it through this first treatment step. “Upon awakening in the intensive care unit, my thoughts were about the possible complications of surgery and the 50 pounds of ascites I was battling. Needless to say, I also had some reservations about bonding with my newborn daughter,” Ms. Sommer explained. But after a week in critical care came two moments of brightness. First, Ms. Sommer’s oncologist declared, “You have stage IV ovarian cancer. That is what is wrong with you. Now let me tell you what is right with you: you are young, you are in good physical condition, and you have great family support. I expect you to do well.” Her oncologist provided reason for hope. The second ray of sunlight came when Ms. Sommer was allowed to choose to stay either on the OB/GYN or the oncology floor. “I chose the oncology floor because I knew the oncology nurses would get me through this process. They provided me with the facts and the care I needed, and helped me to celebrate the birth of our daughter with hope,” Ms. Sommer said.

Thereafter, Ms. Sommer underwent aggressive chemotherapy and a second debulking procedure. Indeed, over the past 9 years, she experienced four remissions and three separate recurrences. Along the way, Ms. Sommer dealt with her own and her family’s emotional challenges and suffered with numerous treatment side effects, including debilitating fatigue. Eventually, Ms. Sommer determined that she did not need to accept the side effects, rather she could manage them. Ultimately, she found her way back—to feeling energized, to working, and to advocating for other women and families affected by ovarian cancer. “However, it was the support and compassion of my oncology nursing team and my husband and caregiver, Joe, that made all the difference during this challenging period in my life,” Ms. Sommer concluded.

Empowering the Caregiver
The challenges of a family facing a cancer diagnosis are many. It is for this reason that Joe Sommer and his wife speak to health professionals and patients about their story, in an effort to offer support and insight in helping them live through the cancer experience. After the diagnosis, the caregiver of the person with cancer undergoes a number of emotions—shock, denial, grief, anger, guilt—along with his new responsibilities and new life path. After the birth of Mr. Sommer’s third child and diagnosis of his wife’s ovarian cancer, he was determined to take care of the newborn, his wife, his other two children, the house, and his job. Others offered to help, but he wanted to be there for his wife and kids. Before long, he was feeling guilty because he could not do it all.

Ultimately, throughout his wife’s many treatment cycles, four remissions, and three recurrences, Mr. Sommer found that reassigning their priorities and accepting the support of those around them was essential to taking care of himself, his wife, and their family. In addition, Mr. Sommer found the insights and resources provided in various resources and programs to be helpful and empowering to the caregiver. “These support resources emphasize that caregivers need to remember that they need to take care of themselves before they can take care of others,” Mr. Sommer said. Some of the challenges in doing so, he said, are delegating care of children and household responsibilities to friends or relatives; spending adequate time to eat, sleep, and reflect; and focusing on the most “important” tasks. “Pulling up a chair and talking with your spouse, for example, may be the most important thing in a given day. Household tasks, on the other hand, can be delegated to a family member or friend who wishes to contribute,” Mr. Sommer explained. In addition, a caregiver often finds himself on a new life path, either temporary or permanent, and needs to create a vision to determine and maintain the new family “status quo,” he said.

“After 9 years of living with cancer, Joan and I have truly learned to talk about our feelings, to prioritize the important things, and to live in the moment. In the process, our relationship has grown deeper, our family closer, our lives richer. Ultimately, life is a journey that we are happy to be on,” Mr. Sommer concluded.