That old Tom Petty song, “The Waiting is the Hardest Part,” keeps running through my mind. Four of my friends are waiting to hear the results of medical tests taken last week.
- Lucas has exhausted all of the standard cancer therapies for rectal cancer and is waiting to hear if he is a candidate for any experimental treatments.
- Sam, who has lived through aggressive treatment for multiple cancers, is waiting to hear results from a test that will tell him if the fact that he is so very, very sick is due to one of them recurring.
- Lucy just had major abdominal surgery and is waiting to hear the results of the pathology report that will determine whether or not her cancer can be treated at all.
- Phil, who has been in remission from two different leukemias, had a heart scan last week that picked up a scarily suspicious spot and is now waiting to find out if his remission is over or a new type of cancer has developed.
That is a lot of high-stakes waiting going on.
Normally, learning that someone I know spent the weekend surfing towering waves of anxiety about possible bad health news might steer me toward writing about the need for reliable ways to deliver test results quickly to patients, or perhaps to comment on new curricula that are helping clinicians learn to deliver bad news more compassionately. Both of these are important.
But this week – maybe because four seems like such a large number of friends to be facing such uncertainty, or maybe because I was also waiting for health news last week – I’m struck by how many different kinds of waiting illness involves.
People who live with serious illness, like my friends, are no strangers to waiting for this kind of phone call. Each has received at least a couple that have changed their lives since their first diagnosis. And so far, these calls have set off a now-familiar reshuffling of priorities, a redefinition of what the future might look like, a cascade of decisions about tests, surgeries and treatments. The waiting down-shifts into the more proximal: Have four weeks on this drug quelled the nausea? Has this food supplement helped with weight gain?
Each of my friends is now waiting for another call. And for each, this time the call may open the door to a new kind of waiting altogether. What does it feel like to come to the end of the road of active intervention? What gets “set off”? What decisions “cascade”? This is a big transition, especially for those who, despite all odds, have stayed alive for years by making use of the latest treatments health care has to offer. How can there not be something, somewhere that can cure or at least slow this disease down, they wonder. And after years of focusing on doing everything in their power to stay alive, how will they spend their time and mental energy now? Waiting to die is a whole new proposition.
Not a lot is known about what this transition is like for individuals. In part, this is probably due to many people continuing to seek treatment on their own or in league with their physicians long after standard approaches have been exhausted. In part, the lack of accounts about this transition can be attributed to the declining health people experience when they reach the limits of treatment. Many are pretty sick by then and have little energy to participate in research studies, writing or public reflection. They have other things on their minds.
While media reports of people deciding not to be treated for a new cancer diagnosis or ending treatment have increased in recent years, coverage of the potential of genetic discoveries, technology and drug development to make disease and death obsolete continue to dominate. In 2010, Atul Gawande wrote about “what medicine should do when it can’t save your life,” in which he illustrated the difference between palliative care and hospice care with stories of individuals. Amy Berman, of the Hartford Foundation, is currently writing thoughtful, illuminating essays that recount her experience living with inflammatory breast cancer after choosing not to seek treatment for it. And the Web makes it possible to find a few individuals’ stories. But overall there is a lack of both data and narratives that could help my friends and others fill in the blanks about what others have experienced when making the decision to end treatment and figuring out how to live until they die.
I’ll spare you a description of possible policy implications, a discussion of how clinicians and researchers might approach producing and providing this kind of information to patients and why they won’t, and a description of probable objections to the need, utility, expense. It may be that we patients and our loved ones will, over time, make such stories available to one another. I don’t know. I do know, however, that the success of modern medicine means that more of us will encounter this emotionally- and existentially-charged intersection of health care and life after treatment ends, and that this time period needs to be more approachable to us. Without it, the seductive promise of a 10 percent chance that an experimental treatment might give us one more month will hold sway. It is, after all, familiar.
In the meantime, each of my friends is a bead on a string that I hold briefly in my hand many times a day as I join them in waiting for the news that may change their lives, fearing the worst, hoping for the best.
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*