New Ways of Thinking About Grief

This new grief is different. For one thing, it includes the loved one with the diagnosis. It also draws in the entire family into a prolonged crisis that some of our interviewees aptly described as "learning to live with death."
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In her book, "The Truth About Grief," Ruth Davis Konigsberg challenges the idea that we all can expect to experience the loss of a loved one in a similar way. In particular, she challenges the "five stage" model of grief that is now familiar to most of us -- the one that begins with "denial" and ends in "acceptance." Konigsberg argues that people grieve in different ways. Perhaps most importantly, Konigsberg asserts that people are in fact more psychologically resilient that we generally think they are, and that a relatively brief period of mourning may be the norm.

In the process of writing our own book on grief, Dr. Barbara Okun and I relied on in-depth interviews with family members who had the experience of losing a loved one to a terminal illness. Some of their stories are posted on our website. The "roadmap" of grief that emerged from this work confirms in some ways what Konigsberg has written -- in particular, that grief is indeed a diverse, not a uniform, process. At the same time, we learned that grief has changed rather dramatically in the 40 years since Elisabeth Kubler-Ross' "On Death and Dying" was published.

In short, grief in the past was often triggered by an event -- the sudden or quick death of a loved one. Steady advances in medicine, however, have transformed dying so that it is increasingly a protracted process. In turn, grief has evolved to the point where it is now a parallel process that often goes on for years. This "new grief" begins when a loved one is diagnosed with a terminal illness. It then proceeds through a long period of diagnosis, treatment, remission, relapse, etc. Elizabeth Edwards, for example, worked with her doctors to contain metastatic breast cancer for several years. The realities of modern medicine dictate that more and more of us will find ourselves confronting this new grief, sooner or later.

This new grief is different. For one thing, it includes the loved one with the diagnosis. It also draws in the entire family into a prolonged crisis that some of our interviewees aptly described as "learning to live with death." It presents unique challenges to families who today tend to be more far-flung than ever before, and whose day to day lives were complicated enough before the diagnosis was rendered. This new grief creates ongoing stresses, not only for the patient, but for his or her loved ones and, in turn, on their own families.

Our goal in writing "Saying Goodbye: How Families Can Find Renewal through Loss" was to collect, organize and then share the collective wisdom we were able to derive from the stories we heard. Indeed, we discovered that this new grief is messy, and that individuals and families experience it in diverse ways. At the same time, we learned a few things that others have said they found valuable as they confronted this situation:

  • There are differences in terms of how "resilient" not only individuals, but families, are. Moreover, there are ways to build that resilience.

  • Although the ways in which they cope with them vary, there are some fairly predictable experiences that families will find themselves confronted with after a loved one receives a terminal diagnosis. Being able to anticipate these can be helpful.
  • Knowing in advance about the complexity of medical and legal issues that await the patient and his or her family can reduce (though not eliminate) stress and its potentially deleterious effects on everyone.
  • Clear communication and end-of-life planning, along with effective palliative care, can improve the lives of terminal patients and their loved ones alike.
  • As for whether a brief period of mourning is the norm, we have found that this, too, is subject to a great deal of variability. Truth be told, the vast majority of those we've spoken with assert that mourning never truly ends; rather, it waxes and wanes over time. Mourning does not, however, need to be debilitating. The way people mourn seems reflect the nature of the relationship they had with their loved one. It hardly needs to be said that marriages are not all the same; accordingly, mourning is anything but a uniform process. Those we love become part or our identity -- our sense of who we are, and why we are here. The more central a loved one is to our identity, the more profound our mourning will be. Helen Nearing, married to the writer Scott Nearing, described her mourning in her memoir, "Loving and Leaving the Good Life," this way:

    Our love had lasted half a century, and still goes on now, eight years after he died at the honorable age of 100. The love continues on my part, and on his side too, I believe. From where else could come the glad certainty every morning, evening and hour of the day that I live in love and am charged with it -- outgoing and incoming.

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