The realities of death and dying have changed profoundly in a relatively short period of time. Why? Thank the ongoing and remarkable advances in medical diagnosis and treatment. As a result of these advances, life expectancy in countries like ours continues to grow. Modern medicine, in short, is getting better and better at staving off death. And because of this the nature of grief has changed.
In her book, Two Weeks of Life: A Memoir of Love, Death, and Politics,Eleanor Clift detailed her experiences after her husband, Tom, was diagnosed with kidney cancer, fully five years before he died. Tom spent the last ten weeks of his life at home, in a bed that hospice services had set up for him. The couple had a good idea, at least four months earlier when Tom’s oncologist recommended discontinuing chemotherapy, that Tom was finally approaching the end.
Clift’s memoir describes what more and more people are facing: the shift in the experience of dealing with dying and death. For better or worse, this shift is a situation that virtually every one of us will find ourselves in sooner or later. Examples from the recent past that we are all familiar with are Elizabeth Edwards and Steve Jobs. For them (and their loved ones) years passed between diagnosis and death. In between were treatments (with all their pernicious side effects), remissions, and relapses.
The crisis, then, begins when we learn that a loved one has been diagnosed with an illness that is terminal or life-threatening. But this marks only the beginning of a journey--one that may last months or years, and which has the potential to affect just about every aspect of our lives and our relationships.
In her groundbreaking 1970 book , On Death and Dying, Elisabeth Kübler-Ross, M.D. identified a process which she believed individuals pass through when they are confronted with death. At the time, sudden and unexpected death was much more common than it is today. The grief associated with that kind of loss is captured powerfully in Joan Didion’s memoir, The Year of Magical Thinking, which recounts her reactions to sudden death of her husband, who collapsed and died of a heart attack in the midst of eating dinner. Didion’s initial response to her husband’s death typifies what Kübler-Ross called denial. She refused, for example, to read his obituaries. She refused to throw away his clothes. And she avoided going places that would remind her of him.
The New Grief
As useful as the Kübler-Ross model may have been in its time, the realities of death and dying have changed dramatically in the intervening forty years. If the kind of grief that Kübler-Ross wrote about--and Joan Didion experienced --represents what we could call traditional grief, then it stands in contrast to what could now be called the new grief. This new grief is defined by a very different set of circumstances.
Today, having a loved one live with a terminal diagnosis for an extended period of time is increasingly 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. Today, a diagnosis of cancer (or coronary artery disease) no longer means that death is imminent. In fact, over 1.4 million cancer survivors are more than 20 years past their initial treatment episode. The same is true for heart disease: the number of deaths immediately following a heart attack has decreased dramatically, and continues to do so.
One profound 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 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.
Regardless of whether it comes suddenly and unexpectedly, or slowly with much advanced notice, the death of a loved one leaves us with a feeling of loss. That is unavoidable, given our human capacity to form attachments. In a sense, our attachments define us. When we lose an attachment, we lose a part of ourselves. And we grieve that loss. That said there is also a case to be made that contemporary grief differs in significant ways from traditional grief, not the least of which is that it includes the terminally ill person. What has increasingly become a protracted process, as opposed to an event, typically draws in the entire family of the dying person for months or even years.
What today’s families often tell me is that what they could have used when going through this new grief is a “road map” they can turn to as they navigate their way through the current realities of death and dying. Dr. Barbara Okun I attempted to provide such a road map in our book, Saying Goodbye: A Guide to Coping with a Loved One’s Terminal Illness. Based on interviews with families as well as terminally ill patients we shared the wisdom we learned from them: what to expect (both good and bad), and what to do (as well as not do).
The challenges that families must face when confronted with a terminal diagnosis of a loved one, we learned, are truly 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 caretaking, which can wear individuals down, strain marriages and sow the seeds of family dysfunction. It frequently leads times to ambivalence about the wisdom of extending life. 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 busier than those of earlier generations.
The new grief also involves confronting family issues that may have been dormant--but unresolved--for many years. These issues typically re-emerge as families move past their initial reactions to a terminal diagnosis and are forced to interact and work together more through a process of extended grief.
If there is any good news in this storey of life extension it is this: that faced with an impending and largely predictable loss—as opposed to a sudden and unexpected loss-- families have opportunities: to plan, to resolve unfinished business, and even to alter their roles and identities. In the end, the new grief affords opportunities—often unseen in the midst of crisis--for moving forward together, potentially as a stronger and more resilient family, after our loved one passes.
@ 2013 by Joseph Nowinski, Ph.D.