Cancer: What today’s caregivers – family members – need to know
As cancer care advances, allowing patients to recover from surgeries at home and receive the bulk of their care on an outpatient basis, the primary caregivers aren’t doctors or nurses. They’re family members.
“For 99 percent of the time, cancer care is provided at home by the family,” said Betty Ferrell, Ph.D., R.NN., director of Nursing Research and Education at City of Hope. “Patients are in the clinic a few hours. People are hospitalized less and less often. It’s really the family providing the care, and they’re doing it 24 hours a day. Now, with health care reform, the movement toward home and family as caregiver that has been on a steep incline for the last 20 years is really increasing exponentially.”
Ferrell has led City of Hope in a five-year National Cancer Institute-funded study to provide comprehensive services for lung cancer patients and their families, focused on quality-of-life issues from the start of treatment. The program incorporates significant education and support for caregivers, to both educate them on how to care for their loved ones and how to take care of themselves during a stressful, challenging time.
Often, palliative care is mistakenly believed to be synonymous with end-of-life care. But the goal of palliative care is to improve quality of life by managing pain, symptoms and psychological or spiritual concerns associated with illness – all good practices to begin as soon as a patient starts cancer treatment. (A recent Institute of Medicine report backs this up.)
The lung cancer program focuses on four quality-of-life areas: physical well-being and symptoms, psychological well-being, social well-being and spiritual well-being. Patients are assessed by a nurse, answering questions about every aspect of their lives. These answers provide a fuller picture of patients and how their lives might be affected by cancer – revealing, for example, what other illnesses they may be facing, who cares for them, what family members they usually care for, and any major recent life changes.
Then patients are given one-on-one education in each of these areas, taking into account whether they are diagnosed with early- or late-stage disease. But the program doesn’t stop with patients. A patient’s primary caregiver receives comprehensive one-on-one training to prepare them to manage the patient’s – and their own – quality of life.
The resulting information is shared in weekly meetings with the patient’s full team of caregivers, including nurses, surgeons, oncologists, social workers, chaplaincy and mental health professionals.
“We really believe this is the model case,” Ferrell said. “We started with lung cancer because it’s the toughest in some ways. There are so many things that make lung cancer really challenging. Many patients are dealing with late-stage disease; often prognosis is poor.”
The project is entering its fifth year, but already City of Hope nurses are applying what they’ve learned to caring for patients with other types of cancers. Efforts are underway to spread the program to pancreatic and ovarian cancer patients, as well as surgical patients. This summer, Ferrell started a program to replicate the family-caregiver portion of the lung cancer program in low-income families.
“It’s hard enough to be a family caregiver if you have resources,” she said. “If you don’t, it’s really hard.”
The courses for caregivers are broken down into chapters that focus on physical, psychological, social and spiritual issues, with caregivers taught how they can assist the cancer patient in each of these areas. They're also taught to take care of themselves – resulting in written self-care plans for each area.
Advice for people caring for lung cancer patients – or any type of patient – includes:
- Do not neglect self-care. It’s not selfish to take care of yourself, and doing so will give you the ability to better care for your loved one. Caregivers often experience fatigue, a weakened immune system, sleep problems, higher blood pressure, appetite or weight changes, and frequent headaches; all of these are signs you need to take time for some self-care.
- Seek help from others. Even if your loved one has some objections, know your own limits and do not hesitate to ask for and accept help. Help can come from doctors, therapists, nurses, support groups or others who have been caregivers for loved ones.
- Be aware of your differences in communicating and expressing emotions. If your spouse or loved one is undergoing cancer treatment, there will almost inevitably be stress related to communication about difficult topics, decision-making, the juggling of many roles, and the fact that you might not feel intimately connected. Be aware that you might each respond to, and express, emotions differently. Some people may prefer to talk things out or do busywork; others focus inward. Remind yourself that everyone reacts differently.
- Have a strategy for bringing up hard topics. You may determine that your loved one needs a different doctor or therapy. Your partner may have worries about losing independence or being perceived as weak. When you need to discuss a difficult topic, practice what you’ll say in advance and understand that your loved one may not want to hear what you have to say. It helps to make your goals for the conversation clear – explain up front why you’re having this talk and what you hope will come of it. Allow time for your loved one to speak uninterrupted, and listen. But don’t expect to settle everything with one talk.
- Be a team. Determine which decisions you should make together, and which you should make independently. Figure out which family tasks can be shared. Outline your needs. Consider how others can help you.
- Exercise. Exercise is good for the body, but it’s also good for the mind. It improves attention, focus, the ability to manage stress and sleep quality. It also increases energy. Those are on top of the physical benefits of improved heart health, blood pressure, bone strength and immune system. It’s OK to start small, even just five to 10 minutes a few times a week.
Caregivers should not neglect their physical well-being, their psychological needs, their need for social connection and support, or their spiritual needs.
“Cancer care isn’t just about treating the tumor,” Ferrell said. “It’s not even about only treating the patient. We need to treat and support their caregivers and families as well.
The lung cancer study is supported by National Cancer Institute grant 1POCA136396-0141.