As a cancer caregiver, you have both responsibilities and rights. Interviews with 86 family cancer caregivers and informal conversations with dozens of survivors and people undergoing treatment revealed that every caregiver needs take charge when faced with the challenges of cancer caregiving.
Rather than allowing the cancer experience to be something that happens “to” them and their loved one, experienced caregivers talked about taking charge, to the degree possible, to restore some sense of control, overcome feelings of isolation, and try to maintain some shreds of normalcy and hope.
Interviewees identified eight principles that guided their family caregiving:
1. We deserve a first-rate medical team that will become partners who treat us like real people whose feelings matter.
- Don’t hesitate to seek out second opinions, or even third ones, and seek out a healthcare team that appreciates both the physical and the emotional aspects of the disease.
- Hire professionals who will partner with you, setting goals with you and exploring options at each treatment decision point.
- Ensure that the team you choose has after-hours phone coverage, encourages your questions, speaks in layman’s terms instead of “Doctor-speak,” and values your push-back when necessary.
2. We have the right to ask about the costs of treatment and to understand what insurance does and doesn’t cover.
- The 2010 Affordable Care Act, being implemented in phases, will be beneficial for cancer patients and caregivers. Currently you can’t be denied coverage for pre-existing conditions, and lifetime coverage limits have gone away. By 2014 annual limits will also be gone, and appropriate clinical trials will be guaranteed coverage.
- Nevertheless, make sure you know how to get your questions answered from your current insurer. For example, don’t assume that oral chemotherapy is covered the same way as infused chemo. As of January 1, 2013, only 21 states require insurers to cover oral chemotherapy on the same basis as infused chemo.
- Open every letter from your insurance company when it arrives, lest it be a renewal notice or denial of coverage that you might miss that requires action or appeal.
3. We are entitled to have a caregiver advocate for the person with cancer attend every office visit and remain on site during every hospitalization.
- The person with cancer is consumed with the battle itself and may not hear or absorb everything that’s said at a medical visit; the family caregiver is an important extra set of eyes and ears.
- Every hand-off from one healthcare professional to another poses the opportunity for a mistake, like failing to record an important development on the chart, or not reading the chart carefully enough to catch a medication allergy. Watching closely, asking questions, and pushing back in the patient’s best interests are totally in bounds.
4. We have the right to access palliative care (to minimize adverse side effects of treatment and increase patient comfort) from the beginning of treatment, no matter the diagnosis.
- Quality of life is a central issue in the cancer experience. Prolonged nausea or pain may lead to depression, physical decline, and loss of the will to live. Every person with cancer has the right to tap available resources to help relieve that discomfort and anxiety. Seek it out from the cancer center, and if unavailable there, investigate community resources through the American Cancer Society (1-800-ACS-2345).
5. I have the right and the obligation to care for myself while caring for the person with cancer.
- The old saying about the oxygen mask on an airplane pertains to caregiving: Take care of yourself so you can care for others. Some caregiving can become a multi-year marathon; you must keep yourself healthy in order to last it out. Do something “normal” every day, and pay attention to your own new symptoms and medical needs.
6. I have the right to talk about how it feels to be a caregiver and to overcome the isolation that cancer imposes on both of us.
- The person with cancer isn’t the only one with feelings that deserve respect. By talking with other caregivers or with a social worker about how it feels, you will help reduce your own stress level and be better able to provide loving and attentive care.
7. We have the right to maintain hope and to create joyful living as long as possible.
- Any one of us might be hit by a car or experience a fatal heart attack at any moment of any day. Most cancer caregivers facing the more dire diagnoses found solace in living every day with gusto and creating new memories with their loved ones. They say to live as long as you’re alive!
8. If my loved one is unlikely to survive, we have the right to determine how and when to orchestrate his or her death in a way that optimizes the experience for the rest of the family.
- A loved one’s death has repercussions for years for every member of the family. It involves lots of choices that may both allow the patient a comfortable and anxiety-free death but that may also create positive memories to help family members heal.
Despite improvements in survival rates, cancer will strike one in two men and one in three women during their lives. Three quarters of families will find themselves caring for a cancer patient. Lessons like these from experienced caregivers are valuable resources to new caregivers for taking charge of the caregiving experience.
Deborah J. Cornwall is the author of Things I Wish I’d Known: Cancer Caregivers Speak Out (www.thingsiwishidknown.com).