Helping Therapy Clients Cope with the New Realities of Death

With New Medical Advances, Navigating the Landscape of Protracted Dying

Joseph Nowinski

The increasing ability of modern medicine to arrest or slow terminal illness means that never before has death been such an extended process for so many. But as a culture, we’re only just beginning to face the deep ambivalence that reality creates for both patient and family.

I was 16 when my maternal grandfather died. It was 5:00 a.m. on Christmas Eve when the phone rang, awakening my whole family. Through my closed bedroom door, I heard my father walk down the hall, answer the phone in a muffled voice and then call out to my mother. My stomach knotted: I knew no one called with good news at this hour.

As I shuffled into the kitchen, I saw my mother sitting at the kitchen table, a handkerchief held to her eyes. My father cast me a stony look. “Your grandfather died in his sleep last night,” he said.

Grief: The Way It Was

In her groundbreaking book On Death and Dying, first published in 1969, Elisabeth Kübler-Ross identified a process that she believed individuals pass through when confronted with death. It begins with denial of the loss, moves through anger, bargaining, and depression, and ends in acceptance.

Today, the story of death and dying is often different. After my grandfather died, my grandmother lived for another 48 years. Things went along smoothly for several years, until she was diagnosed with a large, fast-growing brain tumor, which was then surgically removed. That was my first encounter with the kinds of advances in medicine that can extend life: if this type of tumor had invaded her brain even 15 years earlier, it likely would have been fatal.

The surgery saved my grandmother’s life, but it changed her. She sank into a state I can only describe as a mild melancholia, spending more and more time in the former family room, which Bruno had converted into a bedroom for her. She’d venture out when we visited, but cautiously. In contrast to the outgoing woman I’d known as a child, she was now much more like my grandfather---standing on the outskirts of social interaction, looking in.

Then, as she passed age 85, she began to decline steadily. The mild melancholia spiraled into depression. She became more and more lethargic and uncommunicative. We all felt bad for her, but none of us had any idea what to do, and no one seemed to want to talk about it much.

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 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). 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.

A New Conversation

For the first time in human history, we’re participating in the unprecedented social transformation of the way we die, much of which seems to take place in a no-man’s-land between life and death. And in spite of what’s clearly a massive social shift in the way we now enter and exit the domain of death, we still really don’t know how to talk about it. We haven’t yet begun to have the difficult, honest conversations---person to person, family member to family member, doctor to patient, therapist to client---that would help us better understand what to expect of this harsh landscape, and how to pick our way through it.

Just as important as conversations between patients, their families, and doctors about practical and medical end-of-life issues is the general conversation we all need to have about what the emotional experience of slow dying is really like, for both the ones doing it and those who must stand vigil. Isolation---often self-imposed---and feelings of guilt and shame about one’s own reactions to the long dying of a relative prevent genuinely compassionate and helpful conversations from taking place. We need to help people, particularly caregivers and family members, break out of their isolation and talk in an open, candid way about the untoward---not to mention unwanted and deeply ambivalent---feelings that inevitably arise during the grueling slog through a loved one’s terminal illness.

Everybody dies, and every culture develops an implicit manual defining socially and morally appropriate feelings and behaviors for the occasion. But those old manuals, based on models of dying and death that are increasingly out of date, often aren’t much help, and we’re only just beginning to develop newer, better manuals, more in line with this new world order of death. We’re just beginning to find the vocabulary and the courage to give speech to this process.

This blog is excerpted from “The New Grief." Want to read more articles like this? Subscribe to Psychotherapy Networker Today!

Topic: Trauma | Anxiety/Depression

Tags: body and mind | caregivers | counseling | depression | grief | grieving | psychotherapy | therapist | therapy | stress | networker | coping | medicine | death | On Death and Dying | Elisabeth Kubler-Ross | stroke | heart attack

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1 Comment

Sunday, October 11, 2015 1:29:13 PM | posted by Mary B Mattis, LCSW
When my father was dying, we did the dread, elation, anger, helplessness dance. He and my mother and I discussed what was happening and what we were feeling throughout the 3-year process. His mind was sharp when he decided not to undergo further life-lengthening treatments. He chose to enjoy his home and family for a few months longer, rather than endure perhaps another bed-ridden year of nausea and radiation burns, in an opiate induced brain fog. My father and I had some brave conversations about what we were feeling and thinking. His mind was sharp on the day he told us he knew he was dying, and that it was okay. Even in death he taught me a very important life lesson - how to die gracefully. Though I miss him dearly, I wouldn't have had it any other way.
Mary