Psychologists should be participants when death and dying decisions loom

By The National Psychologist Editor
November 1, 2000



“Everyone knows they are going to die but nobody believes it. If we did, we would do things differently.” Morrie Schwartz, Tuesdays with Morrie

Bill Moyers’ recent four-part television series which focused on America’s aged population facing terminal illness gives pause to psychologists to enter a world they have largely ignored.

Psychologists can make a difference in this world. They can and should make a major impact on the quality of life and death of individuals, couples, families and caregivers by reaching out to their communities to those who need a caring and compassionate relationship.

Moyers used personal accounts of individuals, their families and caregivers to describe unhappy end of life decisions, including the pain and agony of helpless old people left in the care of strangers–albeit well-meaning strangers–but nonetheless in environments they could not have imagined during happier times.

The program examined the extent to which this highly vulnerable population had chosen or were left out of choosing medical interventions while seeking a measure of meaning and comfort during their waning days.

Moyers’ goals for the four-part series titled “On Our Own Terms” were to raise public consciousness about death, particularly when the death of a loved one looms. The viewing experience was moving, intense and personal. Each program highlighted successful models demonstrating end of life care.

Its further goal was to show a need to communicate with friends and family the choices, and to promote an understanding of the importance of palliative care, “advanced directives” and hospice intervention. It sought to motivate and encourage community outreach and advocacy projects–thus to stimulate discussions of topics that unlikely surface until a crisis occurs.

Although psychologists are health and healing professionals, they have largely absented themselves. Coming to grips with death is not a pretty picture. Nor is suffering. Dying as a lonely, isolated person, subjected to tubes and technology, feeling agonizing pain in a hospital room surrounded by strangers can be a terrifying end of life. Dying pain free at home or in an environment surrounded by loved ones, making choices, and still feeling in control of one’s life is “dying with dignity.” To fully understand the dynamics of death and dying is to fully appreciate the dynamics of life and living.

There is much to do. Where do you begin?

Have you ever held the hand of a dying person? Been at the deathbed of a loved one? Participated at the funeral and burial of a patient? Worked with a bereaved family? Been a caregiver to others? Helped family members deal with end-of-life decisions? Organized or facilitated a support group for persons with cancer, HIV positive and/or AIDS? Have you avoided dealing with issues of your own mortality?

The time is ripe and overdue for psychologists to initiate and participate in projects and practices that enhance the quality of life and prepare for the ultimate.

Although modern advances in medicine and profound social changes have prolonged life, they have also transformed the experience of dying. Ninety per cent of Americans say they want to die at home, but four of five will die in a hospital or healthcare facility. The sad facts are that many people die in needless pain and, because the dying process takes longer, it takes a greater toll on individuals, families caregivers and communities. There is a growing sense that while people may not be able to control the inevitability of dying, they should have some control over the difficult circumstances and complex choices faced at the end of life. The search for other alternatives has led to the growth of hospital and palliative care.

Psychologists have remained underrepresented in the area of death, dying, bereavement, loss and grief–not regarded an attractive field to pursue and seen as a taboo topic, depressing, too painful and morbid. But it IS the domain of psychology and psychologists can play a major role on issues of quality of life and death.

Here are some helpful references to become involved:

Albom, Mitch, Tuesdays with Morrie; New York; Doubleday.

“On Our Own Terms: Leadership Guide”: www.pbs.org/onourownterms

“At Death’s Door: What are the choices?” Public agenda for the National Issues Forums: 800/228-0810

“Preparing for the Death of a loved one”. Metropolitan Hospice of New York: 202/854-3402

Five Wishes: Simplified advance directive form valid in 35 states, available in English and Spanish Aging with Dignity: 850/681-2010

Living and healing during life-threatening illnesses: Useful in community dialogue and professional education; Supportive Care of the Dying: 314/253-3458

The Agitator’s Guide: Twelve steps to get your community to talk about dying; Americans for the better care of the dying: 202/530-9864

A Guide for recalling and telling your life story: Hospital Foundation of America: 800/854-3402

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Irene Deitch, Ph.D. is professor of psychology at the College of Staten Island, City University of New York. She introduced and has taught “Psychology of Death, Dying and Bereavement” for 30 years.

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