Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Consider, for example, that two thirds of those who are diagnosed with cancer currently have a five-year survival rate.
The result of all of this is that death has become less and less a sudden and unexpected event. In its place has come a process that begins with a life-threatening diagnosis, proceeds through a period of treatment (or treatments), and ends eventually in death. This process means that both the terminally ill individual and the family are increasingly confronted with the need to “live with death” for a prolonged period of time.
Because the nature of death and dying has changed so dramatically, the way we grieve has also changed. The new grief differs from traditional grief in significant ways, not the least of which is that it includes the terminally ill person. In addition, what has increasingly become a protracted process as opposed to an event not only leaves individuals to mourn but typically draws in the entire family of the dying person for months or even for years. This process has the potential to alter lifestyles and force families to confront issues that once were dealt with only after the death of the loved one. It can easily evoke issues from the past that were never fully addressed or resolved.
Grief is a family matter
Grief today is a family matter as much as it is an individual one. What is needed is a new template—one that is relevant to families and their experience. That is what we present here. This model is intended to be a road map that you and your family can turn to as you navigate your way through the current realities of death and dying. And by the way, when we use the word family, we include not only blood relations but all those who have a significant connection to the person who carries the diagnosis.
The challenges that families must face when confronted with a terminal diagnosis of a loved one are complex. They include evolving new structures and dynamics as the person they love slowly slips away. It means learning how to cope with setbacks and deterioration as well as periods of seeming remission. It means dealing with the complexities of extended grief, which can wear individuals down and lead at times to ambivalence or the unpleasant feeling we get when we find ourselves wishing that the process would end. It means talking with a dying loved one about mortality and other issues that do not arise when death strikes suddenly and unexpectedly. It means learning to make space for extended grief in lifestyles that are typically busier than those of earlier generations.
Perhaps most important, the new grief involves confronting family issues that may have been dormant but unresolved for many years. These issues typically reemerge as families move past their initial reactions to a terminal diagnosis and are forced to interact and work together through a process of extended grief. Finally, it means moving forward together as a stronger family after a loved one passes.
Without understanding and without guidance in each of these areas, family members who are forced by circumstances to cope with prolonged grief are vulnerable to serious psychological consequences, including depression, guilt, and debilitating anxiety. These circumstances can even lead to physical illness. Whole families are vulnerable to rupture as a result of a resurgence of unresolved issues that are unearthed as a result of a prolonged terminal illness in a loved one. Even loving couples may find their relationships in jeopardy as a consequence of unwanted lifestyle changes. What families need now—and will need in the future—is guidance for how to anticipate and deal with such issues.