Most of us want to believe that we're in control of our actions and their outcomes -- that events aren't happening at random or in reaction to forces beyond our sway. We usually do pretty well at it... until a cancer diagnosis violently yanks away that belief.
Formal interviews with 86 cancer family caregivers and informal conversations with dozens of other survivors and caregivers revealed the violent and mind-numbing visions that most experienced at the moment of diagnosis. They described their total loss of control in terms like a car crash, an earthquake, or a shark attack.
For most, the shock of the diagnosis forced them to confront reality. For others, denial greatly complicated the caregiving challenge.
Denial is a conscious or unconscious refusal to accept facts, information, or reality. Many psychologists and social workers contend that denial can be a perfectly natural and helpful defense mechanism for dealing with a traumatic change, as a stepping stone toward acceptance... if beliefs actually evolve in that direction.
Denial usually stems from fear of the unknown, fear of loss, or of having to depend on people we don't yet trust to save our lives or that of a loved one. Denial for a short period can help caregivers and patients to cope. It can be a protective function that buys time to think, to gather information, and to marshal resources that help absorb reality in digestible bites. Yet when prolonged denial begins to stand in the way of the patient's treatment, comfort, or well-being, it's no longer helpful to anyone.
Prolonged denial may look like challenging the physician's diagnosis and seeking out third or fourth or fifth opinions in cases where the cancer isn't exceedingly rare or doesn't require scarce medical expertise. In those cases, further research may simply postpone needed treatments.
Denial may also look like surfing the Internet and seeking out "alternative" treatments (instead of proven medical ones) that sound too good to be true and lack any empirical justifications. Or it may (at worst) look like telling a dying patient that you know he or she could get better if he just tried harder, or refusing to call in hospice when all the dying patient needs is pain control, anxiety relief, and maybe even assurance that you'll be OK, no matter what happens to him.
If you recognize these denial situations, there are four important strategies for breaking through. All respect the disbeliever's desire to be protected:
1. Conversation -- Ongoing dialogue with the health care team, with other family members, and with support resources (like social workers, support groups, and patient educators, often available in cancer resource rooms of major cancer centers) can create perspective. In most cases, the dialogue needs to be initiated by the person in denial, at a rate that feels digestible.
Part of making it digestible is helping the individual to figure out what elements of the experience are more controllable than others. That may come from more interaction with patients and caregivers who are having parallel experiences and may be farther along in the process of redefining their own avenues for restoring normalcy and control. Sharing feelings of helplessness and even fear can validate those feelings while inspiring practical and potentially empowering actions.
2. Refocusing -- Some caregivers can care too much and almost smother the person in treatment. Others may focus so much on the long term prognosis that they lose sight of the here and now.
Instead, keep the patient and treatment goals (cure, comfort, or prolonged life) at the center, rather than the caregiver and his or her potential sense of loss. That might mean letting the patient re-establish control over things like eating patterns and ensuring that you give them space (including alone time), without a hovering caregiver monitoring their every move.
Remember to ask what he or she is thinking and feeling, listen more than you talk, and share positive experiences and memories to help clarify how both of you are coping and whether denial is blocking any actions that would be in the patient's best interests. Finally, don't forget to create joy with the patient every day; we only get to live today once.
3. Journaling -- Keep written records of what is said at medical appointments. Record personal feelings, hopes, and fears as well, and periodically review your entries to reflect on whether you and others are coming to grips with reality in a constructive way. Sometimes writing your own deepest feelings and thoughts can help you to say things to yourself that may at first feel unspeakable to others. Journaling can actually jump start caregiver healing even before caregiving ends.
4. Planning -- Joint planning can help avoid some important decisions falling through the cracks. The treatment process and even the dying process can be eased when the person with cancer can feel in control of the choices that must be made. Those choices may involve:
- When to initiate palliative care for pain and anxiety relief. (The best answer is: earlier in treatment, rather than later. Even those who will survive the cancer deserve such relief!)
- Who should hold the power of attorney, health care proxy, and other legal authorities that may be needed for periods when the person with cancer is not able to act independently.
- When family members and friends should be mobilized to enrich the support network and create new positive memories for all. Those may be as simple as Dee's husband assembling all five kids and their families around her monthly, or as sophisticated as Bill's around-the-world goodbye tour.
- Decisions about when to suspend treatment if it's no longer meeting shared goals.
- Choices about when, where, and with whom to die. For example, Mike chose to die at his vacation home, with a view of the ocean and surrounded by his wife and children. For Artie, it was listening to the baseball game and family members toasting how he had enriched their lives.
In the end, the person with cancer must be in the driver's seat and can do so in ways that help everyone once patient and/or caregiver denial has been overcome. Ideally all members of the family caregiving team will go through the cancer experience with eyes open, either toward a good outcome or a "good" death, with a strong sense of mutual support in confronting and planning for reality.
Deborah J. Cornwall is an experienced advocate on behalf of cancer patients and their families. She is the author of Things I Wish I'd Known: Cancer Caregivers Speak Out, a new book based on interviews with 86 cancer caregivers and dozens of patients and survivors. For more information or to purchase the book, go to www.thingsiwishidknown.com.
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