On Being the Caregiver: Featuring Lung Cancer Spotlights

CPS1428

What Is a Cancer Caregiver?
The Journey of a Cancer Caregiver
How a Caregiver Can Get Informed
Caregiver Perspectives on Gaps and Barriers to Cancer Care
Improving Cancer Outcomes
Self-Care: Caring for the Cancer Caregiver
Resources

A cancer diagnosis not only affects the person with cancer, but also his or her family, coworkers, friends, and pets. Caregivers of people with cancer have an especially difficult job. They provide emotional and physical support and are critical members of the care team alongside healthcare providers. How does someone learn how to be a good caregiver for a person with cancer? What skills are most important? How can caregivers care for themselves?

In May 2018, 8 caregiver advocates who currently care for (or have cared for) someone with cancer met in Cambridge, MA, to take part in a Cancer Caregiver Roundtable, which was moderated and sponsored by Takeda Oncology. During the roundtable meeting, participants shared their personal journeys as caregivers—describing the unique social and cultural factors that shaped their experiences, as well as the skills and behaviors they found most valuable.

Inspired by the candid insights and practical advice that these participants shared with honesty, strength, humor, and, above all, an unwavering love for their “person,” this white paper provides an overview of the unique journey of a cancer caregiver, and features special spotlight sections on caring for individuals with lung cancer.

Participants recount their missteps, triumphs, stressors, frustrations, and joys. They are people who learned firsthand that caring for someone with cancer is neither easy nor predictable. These caregivers now use the knowledge and insights that they gained to become strong advocates for other people with cancer and their caregivers. It is the hope of these roundtable participants that their experiences can empower others who may be feeling vulnerable or overwhelmed by the emotions and responsibilities that come with caring and advocating for a family member or friend with cancer.

What Is a Cancer Caregiver?

Cancer caregivers help their loved ones who have been diagnosed with cancer to learn about their condition and to cope with daily needs.¹ Caregivers may help with needs such as traveling to doctor’s appointments, preparing meals, talking through the patient’s questions and feelings, and learning about treatment options.¹

“Caregivers should know that they are extremely important. I would tell them, ‘You’re about to get a lot of new information, a whole new vocabulary. You’re a vital part of this journey, and you’re going to be a different person after it.’”
—Chris Draft

The Journey of a Cancer Caregiver

New and Evolving Roles

The process of becoming a cancer caregiver can create a shift in roles and relationships. Many of the caregivers described feeling unprepared; learning on the job; struggling and worrying about “getting it right.” There were 2 AM tears, laughs, coffee, and naps. There were days they wanted help from others, and days they could not be around anyone. However, the caregivers were, and continue to be, clear-eyed about their choice to take on this role and grateful for the lessons the caregiver journey brought them—even when it may have been difficult.

“When my husband was diagnosed with cancer, we had kids in elementary school. I was a stay-at-home mom. I had to do a juggling act, and I was definitely ill-prepared.”
—Kimberly Hall Alexander

“I feel like my whole life was a training ground for me to take care of [my husband]. I knew what to do. I threw myself into research, and we went to see an expert in lung cancer immediately.”
—Kristine Cherol

Roundtable participants included adult children, spouses, and parents. Not surprisingly, they had a variety of experiences related to relationships: navigating distinct roles as cancer caregivers—nurse, lover, friend, advocate, educator, and case manager. Also, caregivers’ responsibilities shifted based on the types of treatments required (potential side effects; how often the medicine had to be taken; the mode of administration [eg, oral, intravenously, in the office, at home]), as well as scheduling and travel logistics to be managed.

Learning New Skills

Caregivers had to learn how to communicate with their loved ones and the healthcare team, sometimes acting as the liaison between the two. They also had to become informed on the appropriate medical terms so as to be an equal and active member of the care team. Caregivers often become the translators between the patient and the cancer care team, or the patient and the rest of the family. As their loved ones’ circumstances change, caregivers may be faced with new and distinct challenges that require a wide variety of skills. Figure 1 lists many of these skills and explains how they can be helpful.

“My mother, my husband, and my ex-husband have been diagnosed with cancer. I care for all of them. How do we cope? Primarily through humor.”
—Renee Martin Anderson

Mom: “I am Jillian’s mom, and moms can fix anything. Moms make it all go away, right? I struggled with my role as caregiver and my role as her mom.”
—Ros Miller

Nurse/Spouse: “It was hard to switch from being a nurse to being a spouse, especially when I was worried about my husband and how he was doing.”
—Kimberly Hall Alexander

Ramping Up to Full Time: “My husband didn’t need much physical caregiving at the beginning. He had only minor side effects with the targeted therapy. Then things changed when he started chemotherapy. After those physical and emotional changes, caregiving became a 24/7 job for me.”
—Kristine Cherol

“Speaking medical jargon helps you to be taken seriously by the healthcare team. It should not have to be the case, but I found time and time again that it is.”
—Danielle Pardue

Unique Journeys—A Surprising Finding

Many people think that the caregiver’s journey mirrors that of the patient’s—a roller coaster, changing day by day in intensity. This was not true for many of the caregivers of patients with cancer who participated in the roundtable. In contrast to the patient journey, which may be a series of ups and downs, the participants reported that the caregiver’s journey instead progresses like a hockey stick. The moment of diagnosis is the pivot point where the blade and the handle meet (Figure 2). From that moment forward, caregivers are under increasing stress that does not end if their loved one passes away, but rather is the basis of the transition to a “new normal.”

How a Caregiver Can Get Informed

Pros and Cons of Internet Searching

The Internet—including “Doctor Google”—provides an amazing (and overwhelming) amount of information. Some of this information is reliable and up-to-date, and some of it is incomplete or false. Although some caregivers gleaned valuable insights from the Internet that helped them translate the information from their healthcare teams, others were turned off or disappointed by what they found online.

“I regretted becoming ‘Google, MD.’ Some of the information I found was not completely accurate. Some of the information was good. It helped me feel more equipped when I was talking with doctors, but you can easily overdo the enormous information highway and I think I overdid it.”
—Ros Miller

Caregiver Perspectives on Gaps and Barriers to Cancer Care

Inequality in healthcare, including cancer care, can occur for many reasons, including a bias against certain groups of people based on race, ethnicity, education, having another disability, religious beliefs, English language skills, or even the type of cancer they have (see Lung Cancer Stigma and Lack of Research Funding).^2-4 Some caregivers participating in the roundtable recalled difficulties with accessing the cancer care system for their loved ones. Others found that their healthcare team was accessible in ways that surprised them.

“If we were having rash issues, which can happen for people who are taking targeted drugs for cancer, we would talk with the nurses. We would also e-mail our doctor.”
—Kristine Cherol

Language Skills and Culture

When people with cancer are immigrants and English is not their native language, they may find it more difficult to communicate. They may also have cultural beliefs and customs that can be barriers to care. Some people may hide their cancer diagnosis. Others do not volunteer that they are having treatment-related side effects. They may not want to talk about signs that suggest that their disease is worsening. Because medical interpreters are underused, patients who are not fluent in English may find it difficult to understand what doctors are telling them and may be less likely to participate in treatment decisions.⁵

One of the roundtable participants shared her experience, explaining that the burden of talking with the cancer care team fell squarely on her:

“We are originally from Moldova in Eastern Europe. My mother was diagnosed with stage IV lung cancer [while in Europe]. She had always lived in Europe and had never been sick. You don’t use the word cancer there. It’s a disease. For her, coping was pretending she didn’t have cancer. My mom’s English is not great; she couldn’t understand medical terms. So I had to interpret for her while trying to process all of the information [at the same time].”
—Georgeta Lester

Improving Cancer Outcomes

Much Progress…

Cancer outcomes—how long and how well patients with cancer live their lives—are continually improving. Detecting cancer when it is small enough to be removed and new types of treatments have significantly reduced the burden of cancer in the United States.¹¹ From 1990 through 2014, the cancer death rate among adults dropped 25% and the death rate among children and adolescents (aged 19 and younger) dropped 35%.¹¹

…But a Long Way to Go

As the population ages, the number of new cancer cases and cancer deaths will continue to grow. In some types of cancer, the rates of new cases and deaths attributed to cancer are still increasing, despite improvements in diagnosis and treatment.¹¹ The caregivers who participated in the roundtable meeting highlighted 3 specific areas of cancer care that they believe need substantial improvement: (1) biomarker testing at the time of cancer diagnosis, (2) shared decision-making (SDM) between patients and their cancer care providers, and (3) survivorship. (Survivorship, which starts at the point when cancer is diagnosed, is the idea of living with, through, and beyond cancer.¹²)

Testing for Cancer Biomarkers

For many types of cancer, biomarker testing (also known as genetic testing or molecular testing) is critical. The term biomarker refers to any of the body’s molecules that can be measured to assess health.¹³ These molecules can be obtained from blood, body fluids, or a tissue sample. Doctors use biomarker tests to identify features of a patient’s cancer that can help them choose among treatments.¹³

For example, more than 75% of patients with lung cancer, specifically a type known as adenocarcinoma, have genetic alterations that doctors may be able to use to help inform treatment decisions.¹⁴ The problem is that some patients are not getting tested. Data from the Lung Cancer Alliance HelpLine showed that from September 2016 through July 2017, 155 of 288 (54%) patients who called the helpline and were asked if they had received any kind of molecular testing replied “No.”¹⁵

The caregivers said that they would like to see cancer societies, pharmaceutical companies, and schools take a stronger stance when educating people about biomarker testing.

“This is why I talked to people at about 60 cancer centers during the first year. People have been aware of lung cancer for a long time because of health classes taught in schools, but they do not have the latest information. Patients and caregivers should not have to fight for genetic testing.”
—Chris Draft

Making Cancer Decisions Together

The concept of shared decision-making means that individuals with cancer (and their caregivers) make decisions about treatment together with the healthcare team. SDM is especially appropriate when there is more than one treatment to consider, and the patient’s preferences and values can help the team choose the treatment that is best for the patient.¹⁶ Studies show that SDM results in positive outcomes for people with cancer.¹⁶ However, research has also identified barriers to SDM, with some patients and their caregivers feeling a limited ability to participate.¹⁶ Cancer caregivers in the roundtable meeting reinforced how important it is for patients and caregivers to stay informed, ask questions, and share their preferences and needs.

“I learned not to lean on the doctors and let them make all the decisions. It is so important to pay attention to what they are doing. Doctors are human; they make mistakes. You need to be a part of decision-making and keep communications open.”
—Robin Youkilis DiPaolo

“We, the caregivers, need to ask questions and learn as much as we can. Chemotherapy can cause nausea, vomiting, and low blood counts, but it can also cause things like ‘chemo brain’ (thinking and memory problems caused by chemotherapy). I wish I had learned about chemo brain from the very beginning.”
—Kimberly Hall Alexander

“Second opinions [related to treatment decisions] are not a bad thing. Your doctor should not be offended if you want a second physician to look at your case. If they are offended, find a new doctor.”
—Kristine Cherol

Self-Care: Caring for the Cancer Caregiver

High Stress

The physical and emotional stress associated with caring for a loved one with cancer may be a lot to handle.¹ For almost all caregivers, this role is new and different. Many things about how you interact with your loved one may change. Caregivers in the roundtable shared that it is normal to feel confused, sad, guilty, angry, lonely, and stressed. Their ability to handle the tasks and pressures of their caregiver role changed from day to day, as well as over time.

“My wife was in amazing shape when she was diagnosed with stage IV lung cancer. That’s when you really learn that anyone can get lung cancer. I became her caregiver, which meant I was her trainer, her equipment guy, and her cheerleader. For me, the most important thing was to always give her a visual of hope. Regardless of what was going on, she needed to see me saying, ‘Let’s go get this.’”
—Chris Draft

“This is not easy. I feel as if I live under a cloud of shoes, just waiting for one to drop.”
—Danielle Pardue

Some of the caregivers admitted that it was hard for them to hear others’ ideas about what they should do to care for themselves. This was particularly tough when they were already stressed by taking care of their loved one’s needs. If you feel this way, know you are not alone, and these feelings are very common.

“I felt overwhelmed with all of the advice: take a walk, eat well, get a good night’s rest. Sure, walking helps, but it’s not that easy. I remember being so sick of dealing with medical stuff that I [would] blow off my own medical appointments.”
—Kristine Cherol

Less Helpful “Help”

The caregivers noted that some of the support offered by friends and family was valuable, whereas other pieces of advice were not at all helpful. A few of the caregivers were able to turn the situation around to get the help they needed.

“Most people mean well, so when someone offers help that’s not helpful, flip the conversation around and ask for something that would help. If someone were to ask if the patient has tried a juicing diet, reply by asking ‘Could you bring me lunch Saturday?’”
—Danielle Pardue

“Make a list of the things that you need, such as dinner on a given day or a gas card, and then when people ask how they can help you have an answer at the ready.”
—Kristine Cherol

Finding Resources

Caregivers said they often needed help with things that were not directly related to the patient’s medical care at all. Examples are childcare, household tasks (including yardwork and home repairs), as well as finding therapists and support groups for both their children and themselves. Each of these tasks required precious time that the cancer caregivers did not have.

“Caregivers like me look for help with household maintenance, childcare, and activities for their kids. I remember looking at house cleaning services. They offered discounted cleaning services, but only if the female of the house was the patient, not for me and my husband.”
—Kristine Cherol

Some tasks were also difficult to deal with because they were new. Many of the caregivers said that it was challenging to tell an employer about their loved one’s cancer diagnosis. Most had never had to talk with insurance companies about employment benefits or understand the Family Medical Leave Act. The stress was real and continuous, and the group of caregivers retrospectively empathized with each other about how they wished they had been able to advise themselves in the past.

“Caregivers need help with tasks that have nothing to do with the patient. Most people do not know how to navigate their loved one’s employer and the Family Medical Leave Act. [How do you manage that on top] of all the other phone calls you have to make? We need so many different skills and so much knowledge at different times. The big problem is that you don’t know what you need until the very moment you need it; hindsight really is 20/20.”
—Danielle Pardue

Accepting Help

In this context, caregivers participating in the roundtable were quick to state that accepting help from others is not always easy. When tough things happen, many people tend to pull away and try to handle them on their own.1 The group agreed that it is important to be honest with yourself about tasks that you can do, tasks you can distribute to others, and tasks you can leave undone. Their suggestions included:

• You do not have to do it all; ask for help
• Be specific about what you need
• Don’t be surprised if people you thought would help do not “show up”
• Set boundaries; share details with only those people who you trust
• It is OK to be “selfish”; take at least small amounts of time for yourself.

“I don’t ask for help very well. And it didn’t always work out. I asked my family for help, and they said, ‘You can handle it; you’re superwoman.’ I lost patience with them at that point and told them they were all going to outlive my daughter. I coped by spending all of my time with [my daughter] Jill.”
—Ros Miller

“The concept of taking time for yourself is tough. But you can make the breaks bite-sized; take 5 minutes to listen to your favorite song.”
—Kristine Cherol

“After my husband passed, I went to fitness classes where no one knew me or what I had gone through. That was huge for me. With people I know, it was always, ‘I’m so sorry.’ You do not have to share your story with everyone, in person or on Facebook. You can set boundaries and be selfish sometimes. This is OK, it’s healthy.”
—Kimberly Hall Alexander

References

1. National Cancer Institute, National Institutes of Health, US Department of Health and Human Services. Caring for the Caregiver. NIH Publication No. 14-6219. www.cancer.gov/publications/patient-education/caring-for-the-caregiver.pdf. Published September 2014. Accessed August 18, 2018.
2. Carter AJR, Nguyen CN. A comparison of cancer burden and research spending reveals discrepancies in the distribution of research funding. BMC Public Health. 2012;12:526.
3. Bjork D. Is there a stigma in lung cancer research funding? LungCancer.net website. https://lungcancer.net/living/stigma-in-research-funding/. Published August 30, 2017. Accessed August 18, 2018.
4. Ashley L, Lawrie I. Tackling inequalities in cancer care and outcomes: psychosocial mechanisms and targets for change. Psychooncology. 2016;25:1122-1126.
5. Perez GK, Mutchler J, Yang MS, et al. Promoting quality care in cancer patients with limited English proficiency: perspectives of medical interpreters. Psychooncology. 2016;25:1241-1245.
6. American Cancer Society. What causes non-small cell lung cancer? www.cancer.org/cancer/non-small-cell-lung-cancer/causes-risks-prevention/what-causes.html. Last revised May 16, 2016. Accessed August 18, 2018.
7. Hamann HA, Ver Hoeve ES, Carter-Harris L, et al. Multilevel opportunities to address lung cancer stigma across the cancer control continuum. J Thorac Oncol. 2018;13:1062-1075.
8. Carter-Harris L. Lung cancer stigma as a barrier to medical help-seeking behavior: practice implications. J Am Assoc Nurse Pract. 2015;27:240-245.
9. Chambers SK, Dunn J, Occhipinti S, et al. A systematic review of the impact of stigma and nihilism on lung cancer outcomes. BMC Cancer. 2012;12:184.
10. Quaife SL, Marlow LAV, McEwen A, et al. Attitudes towards lung cancer screening in socioeconomically deprived and heavy smoking communities: informing screening communication. Health Expect. 2017;20:563-573.
11. National Cancer Institute, National Institutes of Health, US Department of Health and Human Services. Annual Plan & Budget Proposal for Fiscal Year 2019. NIH Publication No. 16-7957. www.cancer.gov/about-nci/budget/plan/2019-annual-plan-budget-proposal.pdf. Published September 2017. Accessed August 19, 2018.
12. Cancer.net. What is survivorship? www.cancer.net/survivorship/what-survivorship. Published May 2018. Accessed August 19, 2018.
13. National Comprehensive Cancer Network. Patient and caregiver resources: biomarker testing. www.nccn.org/patients/resources/life_with_cancer/treatment/biomarker_testing.aspx. Accessed August 20, 2018.
14. Mendes E. Discovery of new lung cancer mutations may mean more treatment options. American Cancer Society website. www.cancer.org/latest-news/discovery-of-new-lung-cancer-mutations-may-mean-more-treatment-options.html. Published July 25, 2014. Accessed August 18, 2018.
15. King JC, Ciupek A, Perloff T, et al. Identifying and addressing gaps in molecular testing for patients with lung cancer. Poster presented at the18th IASLC World Conference on Lung Cancer; Yokohama, Japan; October 2017. Accessed July 8, 2019.
16. Butow P, Tattersall M. Shared decision making in cancer care. Clin Psychol. 2005;9:54-58.

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