[Image via Wikimedia Commons]
We have all seen these scenes in a grade-B movie or television series. You could write the scene yourself:
Older, usually white male physician finishing up an exam on a worried-looking man or woman. “Now,” he says, “is the time to take that cruise you always wanted to take and put your affairs in order.” Sometimes a horrified family member is in the background. “But how much time do I have doctor?” Fade scene out.
That may define a certain point in our cinematic history, but is not how it is now, and certainly not how it ought to be. Such a discussion occurs too late. Today’s discussions take on a different tone at a different time, as more patients become long term survivors of cancer.
Discuss Goals Early
As lovely as the thought of an extended vacation can be, most of us have more overarching concerns. Our families and friends, work, community projects, our faith make up the fabric of our lives. Cancer treatment, often discovered abruptly without much warning, interferes with our productive selves. As more treatment occurs on an ambulatory basis, not during a hospital stay, the engaged facts of our lives are not suspended with hospital admission. Those aspects of our lives are often, not always, the result of some degree of choice and effort. That pattern of choice, and the wiser array of treatment decisions involved in modern cancer treatment, forces us to think how our treatment goals dovetail with how we live our lives. It often forces an unexpected introspection to identify our priorities.
The What Is Important to Me tool has evolved as a tool for such a situation. What are the optimal choices for my treatment? Will my best shot be a combination of surgery, chemotherapy and radiation therapy? In what sequence? How will that affect my chances of survival? What do I need to invest in the short-term to survive? Will I be able to work and take care of my family? If I have to choose a treatment regimen with a survival advantage over one that is less arduous and protects my short-term quality of life, how would I decide? Am I the one to decide? Shouldn’t my doctor? (S)he knows more about this than I do, but does not know me and how I would set priorities. Would I rather be given one option or would I rather share the decision-making with my treatment team?
This Seems Too Simplistic
The What Is Important to Me tool, which appears in my book Learn to Live Through Cancer: What You Need to Know and Do, requires little more than some quiet thought and frank discussion with key family members and friends. Such a discussion starts – not stops – with this form at the time of diagnosis. It helps focus priorities as treatment progresses when decision points arise. It helps you, your family, friends and providers with a general direction. Most importantly, the early discussion frames thought needed for upcoming decisions.
The items on the form reflect these basic parameters. What type of cancer do I have and is it localized or in a number of parts of my body? How much do I want to be involved in decision-making? Is my goal a cure with long-term survival even if I am uncomfortable for a while? Is comfort my main concern? Am I optimistic, pessimistic or realistic in general? What is the worst thing I have been through before and how did I handle it?
What is Important to Me can be fodder for quiet personal reflection or the basis for hard family discussions. Documentation of these wishes varies state by state and is periodically updated. The fabric of the forethought or discussion is the most formidable obstacle. With frank and open consideration, the paperwork becomes anticlimactic, though important legally. But the discussion is front and center.
Goal setting is only one component of the preparation you – and your loved ones – make as you are beginning to find out about a cancer diagnosis and the treatment plan. It is the most personal part. Greater context is found in Learn to Live Through Cancer: What You Need to Know and Do.
It has been suggested that all of us, being treated for cancer or not, should spend some time thinking about our life’s directions, aspirations and limits.