This is the question that Dr. Barbara Okun and I set out to answer several years ago. The method we chose was detailed interviews with people who'd gone through just such an experience. We asked them what it was like -- the best and the worst -- as well as what they would want others to know if they found themselves in this situation.
The fact is that thanks to steady advances in medicine, almost all of us will find ourselves facing this challenge at some point. Diseases and conditions that once proved quickly fatal -- heart attacks, strokes, cancer -- no longer are. Instead, individuals and their families are increasingly likely to find themselves mired in a protracted process that only begins with a diagnosis. Thanks to those who volunteered to share their experiences, we constructed a sort of "road map" of what most people can expect to experience. That road map is described in detail in our book, but what follows is a synopsis.
Crisis
A terminal diagnosis throws not only the person who gets the diagnosis (the patient) into a crisis, but his or her family and other loved ones as well. We all know someone (probably many people) who received a diagnosis that could have proved quickly fatal a generation or two ago. Not so, today. Although people do die suddenly and unexpectedly, today this is more the exception than the rule.
Sometimes the diagnosis itself may come quickly and unexpectedly, as was true for one man who saw his doctor for persistent sores on his tongue, only to be diagnosed with cancer within two days. For others, the diagnosis is finally rendered only after a series of tests that can take weeks. In either case, this is where the crisis begins, for the patient and the family alike. And this is key: Unlike sudden death, which was once the norm and which led to what we could call "traditional grief," the process that begins with a terminal diagnosis marks the start of a lengthy process that we've called "the new grief."
Unity
After the initial shock subsides, most patients and their loved ones move into a stage we call "unity." In this stage, the family tends to pull together. There are, however, exceptions, such as those families whose members suffer deep injuries caused, for example, by abuse or neglect. The child who has long harbored feelings of resentments toward parents or siblings may be understandably ambivalent about rolling up their sleeves and pitching in when the crisis strikes.
Families differ in how they respond to crises. So-called "resilient" families can be identified by a common family "culture" that includes certain beliefs that are modeled by the parents. These beliefs include the belief that life has meaning (we are here for a purpose), that crises are a normal part of life (and should be expected) and that the best way to deal with a crisis is to marshal resources and attack it. In contrast, psychologically "fragile" families are prone to feel victimized by a crisis, to see no opportunities in the midst of crisis and to become paralyzed.
We offer many specific suggestions for how families can make the most of their efforts to pull together during this unity stage, beginning with meeting and delegating different responsibilities, such as attending doctors' appointments and taking notes, meeting with an attorney to begin the process of planning for various eventualities, and even taking on some of the responsibilities formerly shouldered by the now ill loved one.
Upheaval
The hallmark of the new grief is that it tends to go on and on. Today a terminal diagnosis is most likely to lead to a process that involves treatment and remission (or arrest), followed potentially by relapse and further treatment, etc. It is a process that can easily take years, to which the recent death of Elizabeth Edwards from metastatic cancer attests. No matter how much the family may want to come together in the face of this crisis, people have told us that sooner or later it creates stresses. People today are busier than ever. The majority of contemporary families are comprised either of two wage earners, or else a single parent who is perpetually on the verge of burning out. Managing family life and a household is difficult enough for most of us without the added burden of a terminally ill loved one.
Regardless of intentions, then, the prolonged process that is terminal illness creates stresses and strains, not only on the patient, but on his or her loved ones, as well. This situation is compounded when families are far-flung, which is also more the case today than for earlier generations. We've found that many hesitate to admit to the stress they feel, or to seek relief. Yet that is exactly what they ought to do.
Resolution
As the saying goes, every crisis presents opportunities. That is exactly what the upheaval created by a prolonged terminal illness can lead to. We've heard many stories about how people were able to identify, address and resolve even longstanding resentments and grievances -- if only they had the courage to do so -- as a consequence of having a loved one struggle with a terminal illness. Despite the chronic stress that terminal illness creates (or perhaps because of it), people have told us stories of how they were able to redefine themselves by confronting and changing their role within their family.
As stressful as prolonged terminal illness can be, for those who choose to seize it, it can also be an opportunity: a doorway to reflection, decision and positive change.
Renewal
Lest readers think we are suggesting that this process we call "the new grief" leads to some invariably happy ending, in truth this is not always the case. Some families, for example, falter even at the unit stage. Others suffer with resentments and other unfinished business, rather than confronting these things. However, depending on how both the patient and his or her loved ones choose to approach end-of-life, death can lead either to a tangle of loose ends or a departure point for moving forward.
We do not believe that grief simply ends. Relationships are much more complicated than that. For many people, mourning does not end, but merely ebbs and flows. Terminal illness and death, as best we've been able to tell from the many stories we've heard, can at best allow the family to move forward without excessive doubt, anxiety or guilt, but only if the patient is willing to participate actively in end-of-life planning before it is too late. Creating medical directives and clearly stated wills -- making it clear whether one would prefer hospice care at home over heroic measures in an intensive care unit -- puts families in a position to feel that they helped their loved one die with dignity. That, from everything we have heard, is surely a blessing to the entire family.
We invite you to join this conversation at our web site, NewGrief.com.