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. We all die, but modern medicine is getting better and better at staving off death. And because of this the nature of grief has changed.
In her groundbreaking 1970 book, On Death and Dying, Elisabeth Kübler-Ross 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.
Contrast the above to the story told by Eleanor Clift in her book, Two Weeks of Life: A Memoir of Love, Death, and Politics. There she details 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 that the end was finally approaching, when Tom’s oncologist recommended discontinuing chemotherapy. Even then another four months transpired.
Clift’s memoir — like Patti Davis’s account in The Long Goodbye, which recounts the decline and death of her father, President Ronald Reagan — describes what more and more people are facing: the profound shift in the experience of dealing with dying and death.
A Black Hole
This shift in the nature of dying in turn has created a profoundly different experience from what we have come to call mourning, which begins after the death of a loved one. This new grief begins when we learn that a loved one has been diagnosed with an illness that is terminal or life-threatening. Some have likened this to “falling into a hole with no idea of which way to turn.” Others have described the new grief as a process of “catapulting from crisis to crisis with no one to turn to other that whoever happens to be your doctor at that moment.” This marks the beginning of a journey that may last months or years, and which has the potential to affect just about every aspect of our lives and our relationships.
As useful as the Kübler-Ross model may have been in its time, the new realities of death and dying demand a new model–one that can help patients and loved ones alike understand and navigate their way through 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. Of these, approximately 20 percent will experience a recurrence of the cancer (usually in a different organ) and the whole grueling process will repeat itself.
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 the new 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.
A Road Map for Death and Dying
Drawing on personal experience as well as our professional work, Dr. Barbara Okun and I set out to see if could not create that “road map” that families can turn to as they navigate their way through the current realities of death and dying. We and our associates also conducted many in-depth interviews with family members who had first-hand experience with this emotional rollercoaster. That road map is presented in Saying Goodbye: How Families Can Find Renewal through Loss.
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 navigating your way through a fragmented medical system which often lacks communication, much less coordination. 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 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, to insure that when death does come it is with grace and dignity. It means learning to make space for extended grief in lifestyles that are busier than those generations that went before us.
The new grief also 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 more through a process of extended grief. Finally, the new grief means moving forward together, potentially as a stronger and more resilient family, after our loved one passes.
The new grief is neither pretty nor orderly. What we share in our book, however, is some of the wisdom we have gleaned from those who have walked this path that we all will walk — if we have not already. It is, in effect, the book that Dr. Okun and I would have liked to have when we were there.