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The New Grief

My grandparents’ experiences speak to the changes that have occurred since On Death and Dying first appeared. If the kind of grief that Kübler-Ross wrote about represents what we could call “traditional” grief, it stands in stark contrast to what could now be called “contemporary” grief. The two are accompanied by different circumstances, just as my grandparents’ deaths differed greatly. My colleague psychologist Barbara Okun and I have come to refer to these changes as the new grief.

The grief we experience today results directly from the increasing ability of modern medicine to arrest or slow terminal illness and stave off death, even as the body and mind progressively shut down. I lost my grandfather whole, in one fell swoop; I lost my grandmother piece by piece.

The essence of the new grief is the gritty business of living with slow death. For those of us in developed countries, this experience represents a historic shift: never before, for so many, has death been such an extended process, rather than an event. Of course, people still die suddenly and unexpectedly, but with recent advances in surgery, drugs, medical devices, and other high-tech treatments, many more people die slowly. Protracted death creates special challenges for both patient and family.

The new grief is a twisting journey, which begins with the diagnosis of a terminal illness, proceeds through a period of treatment, may include a remission and a later return to illness, which possibly spurs a new round of treatment, and ends, finally, in death. This process may go on for months, or it may unfold for years. The ill or dying person is an integral part of the process—which creates protracted upheaval in the lives of the patient and loved ones alike.

The new grief is an emotional rollercoaster. At times, we may seem to be gliding smoothly, only to find ourselves moments later strapped into a car with bad gears, threatening to leap its tracks. We lurch from dread (the diagnosis) to elation (remission), from anger (at having no good choices or facing mistaken diagnoses) to helplessness (as we watch our loved one become weakened by the treatment and suffer painful or disfiguring side effects). Emotional pressure is continuous, either in the foreground (when a diagnosis is rendered or a new treatment option is being considered) or in the background (during times of remission or apparent progress). Whether or not a loved one recovers, we find ourselves in a prolonged state of stress, which can gravely threaten our own emotional and physical health.

In our interviews with people who are struggling with the new grief, a common theme is a profound feeling of isolation and a lack of guidance about how to handle their thoughts and feelings. As one man put it: “Throughout my sister’s illness, we were catapulted into crisis time after time, with no one to turn to other than whoever the doctor-of-the-moment happened to be.”

A Road Map for the New Grief

As psychotherapists, how can we help clients who find themselves in the underworld of terminal illness? We can try to help our clients make some sense of a profoundly bewildering experience. By constructing even a rudimentary road map of the new grief and developing some understanding of what to expect, we may be able to help clients find a measure of peace and agency during a harrowing time.

Out of interviews with hundreds of men and women facing terminal illness in a loved one, Barbara Okun and I have constructed a multiple-stage model for family grief. (The term family refers to blood relations as well as all those who have a significant connection to the ill person.) These stages are fluid, blending into one another much the way developmental stages merge into one another. We’ve found that each stage can vary greatly in length and intensity, depending, for example, on the length of the terminal illness and whether significant periods of remission occur. What follows is a rough guide to the new grief, encompassing both its challenges and its opportunities.

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  • Comment Link Wednesday, 21 March 2012 22:26 posted by Joan Landry Haltigan

    I was a Caregiver for 28 years to the love of my life who suffered a massive cerebral hemorrhage at age 38. The emotions expressed in this article, I felt.

    At the same time, as an only child, my mom, also in a wheelchair, depended on me for love, assistance and nursing care, and then there were 4 young children to raise.

    I wouldn't have done anything different for those I love, but because of those experiences, I wouldn't want to put my family through what I went through and have decided that letting nature take its course isn't all that bad.

    I believe we continue therapy over and over because of circumstances and/or fear of dying.

    I know also, that had I been diagnosed with a terminal illness when my children were still young, my mom, still alive and my husband in need of my help, I would have moved heaven and earth to be available to care for all of them.

    Great article, long overdue.

  • Comment Link Thursday, 18 August 2011 16:58 posted by Leah Forster

    This article is long overdue! I have a unique (and exhauting) perspective as a pediatric oncology social worker and the caregiver to two parents at end of life. As I help parents make excruciating decisions about their children's health care by day, I am also currently on the other side making those excruciating decisions for my parents who never wanted to talk about what kinds of care or interventions they wanted or didn't want. So it's a guessing game, but informed by what I know from working in health care social work for 20+ years: many times, death isn't the worst thing.

    It takes unflinching bravery to say no to interventions that I know have no value. And with nursing home regulations as they are (not patient- or family-centered), I must keep saying no. And it breaks my heart every time.