Different Death Pathways
Three classic 21st century dying patterns
Death occurs without any warning. (Least common path today in the developed world)
People decline steadily as they approach death.
People have an erratic course; fatal disease takes years or decades with ups and downs. (Probably most common today)
History of Dying
For almost all of human history:
No medicine—People died quickly of infectious diseases.
Dying was familiar—a routine event at every stage of life.
Circa early 20th century:
Modern medicine conquers infectious diseases, moving death to the end of the lifespan.
Dying moved to hospitals, far from view.
Result: dying is a strange, frightening, “ health care managed” event.
Circa late 1960s—death awareness movement
University courses on death became popular; people urged to plan for it.
It’s OK to talk about death and plan for how you will die, but still “the act” is typically off screen.
Kubler-Ross’ Stage Theory
The Facts: Individual Variations/Different Feelings
Dying People experience many emotions (but not in predictable stages).
Some experience a state called “middle knowledge” (both know and don’t fully accept they are dying).
Hope is often the main emotion (I can beat this thing!) until the very end.
Some are energized and feel more alive (I’ve got to get it together and live as fully as I can!)….. recall socio-emotional selectivity theory.
Bottom line: Don’t stereotype people as feeling a certain way or decide how they should act.
Other Facts about Dying
The elderly typically report no fear of death, although they are afraid of the pain of dying.
Off-time deaths (such as in youth) are particularly painful for the person and survivors.
There is nothing more devastating than a child’s death.
What helps assuage the pain (for parents)?
If the child is older, knowing you talked about death to your dying daughter or son.
Sharing in the hands-on care during the final days.
Feeling health care providers are caring and involved.
In Search of the Ideal Death
According to the Bible, death is appropriate after a long life and should occur peacefully at home. People around the world concur: “I want to die surrounded by my family, not tortured by machines in intensive care.”
One psychologist offers the following goals:
To not suffer debilitating pain
To feel secure and in control of how we die
To be close emotionally to loved ones
To foster spirituality or feel a sense of integrity
(What are your major priorities for a good death? See the next slide)
Checklist to Evaluate Your Dying Goals
Health Care System: Its Problems Handling Dying
A classic study:
Main point: Death doesn’t occur on schedule, hospital care is set up as if it does. So mismatches between the predicted “dying trajectory” and what really happens are common.
Patient “expected to live” may suddenly die. (horrifying to everyone)
Patient “expected to die” lives longer than expected. (So family, called to the bedside repeatedly, finally says: “This better happen soon.”)
A multicultural society—Raises risk of miscommunication between families of the dying person and hospital staff
An incredible array of technologies—When do we turn off machines that prolong dying and let people die in peace?
The Solution: Palliative Care Interventions
Strategies to promote an optimal death
End of life care instruction—Give health care workers training in caring for dying people
Problem: not that frequent, partly because it is against the medical goal to save lives
Palliative care service—specific unit devoted to providing high quality treatment to people who are definitely dying
Hospice care—the main alternative today
Hospice Movement Fact Sheet
Definition: Setting (outside of the traditional hospital) devoted to fostering a good death
Has the same philosophy as the natural childbirth movement Death is a human event. Let’s take it out of the hands of medicine. (also gained steam in the early 1970s)
Most often today involves teams that come into the person’s home to help family cope.
Physician must certify that the person is within 6 months of death (services covered by Medicare).
Tremendous growth, but still only 1 in 4 people who die in the U.S. have been enrolled.
Barriers to Using Hospice
People are reluctant to give up hope and say, “I am dying.”
Flies against collectivist cultural norms, where traditionally it’s not appropriate to discuss death.
Person needs an involved family committed to the intense caregiving.
Physicians may also be reluctant to say to families: “This person is definitely dying.”
Consequence: most people in hospice enter when death is imminent.
Problems With Dying at Home
From the perspective of the:
No privacy, have to have my intimate needs cared for by family.
Don’t want my family to suffer.
(ATTACHMENT ISSUES SUCH AS THESE ARE OFTEN OUR FIRST PRIORITY WHEN APPROACHING DEATH—see the chart on page 468)
Need to be on call 24/7.
May have to quit work—causing huge financial strain.
Bottom line: People with life threatening illnesses may be ambivalent about dying at home.
Making the case for home and hospital deaths
Written document spelling out instructions with regard to life-prolonging treatment when the person is mentally incapacitated.
Durable power of attorney for health care
Do Not Resuscitate Orders (DNR)
Do Not Hospitalize Orders (DNH)
Documents Person Fills Out
Living will=healthy person spells out preferences for life sustaining treatment if incapacitated.
Main issue=NO GUARANTEE THEY WILL BE FOLLOWED as the info. in the typical document is vague and family members can override it
People often want family members to make decisions.
Durable power of attorney=Person designates someone (typically family member) to make health care decisions if becomes incapacitated
Preferred also because helps prevent family fights.
Documents Completed by Others
Filled out by physician in consultation with family members when person is already impaired
DNR=if a person goes into cardiac arrest, the hospital staff will make no effort to perform CPR.
DNH=placed into the charts at nursing homes, specifying that in a life threatening emergency no hospitalization or emergency care should be performed.
Deciding When to Die: A Controversial Leap
Two important distinctions:
Passive euthanasia=not performing heroic treatments when person is dying
Acceptable; it’s what advance directives are all about
Active euthanasia=helping the person die
Physician-assisted suicide: Doctor prescribes a fatal medication to a terminally ill person (at person’s request), or directly administers a fatal medication
Illegal everywhere but the Netherlands and Belgium (Physician-assisted suicide is legal in Oregon & Switzerland.)
Issues with Active Euthanasia
Safeguards are built in (e.g. person must make several requests), but still there is anxiety.
Person might be pressured into deciding to die by unscrupulous family members.
Person might be seriously depressed, and would NOT want to die if the depression were treated.
Violates the religious injunction against suicide: “Only God can give or take a life.”
Others say what about forcing people to suffer when there is no hope of recovery?
“Slippery Slope” Issues
The concern: Once we legalize active euthanasia, society might decide to “pull the plug” on people whose quality of life WE deem as impaired.
Age-based rationing of care
In the old-old, the government should not pay for expensive heroic measures aimed at defying death.
In a society with limited resources, we should use our most expensive death defying machines where they really make a difference– in people who have not lived out their completely full span of life.