Terminal Illness And Death

DEATH ACROSS THE LIFESPAN: CAUSES & REACTIONS

We associate death with old age, but death occurs throughout the life span.

Infant and Childhood Deaths: the US has a high infant mortality rate.

Parents dealing with infant death have a very hard time and depression is a common reaction.

Prenatal death (Miscarriage) is also difficult, especially since others do not attribute much meaning to a miscarriage so parents feel isolated.

DEATH IN ADOLESCENCE

Adolescents‘ views of death are also unrealistic & often highly romantic.

Personal Fable (beliefs that they are unique & special) lead to a sense of invulnerability

The most frequent cause of adolescent death is accidents (usually motor vehicle)

Other frequent causes include homicide, suicide, cancer, AIDS

Adolescents tend to feel invulnerable so confronting a terminal illness can be difficult; they often feel angry and "cheated".

DEATH IN YOUNG ADULTHOOD

Death is young adulthood is particularly difficult because it is the time in life when people feel most ready to begin their own lives.

Young adults facing death have several concerns. Developing intimate relationships and one's

sexuality. Future planning (e.g., marry or not? have children?).Like adolescents, young adults are outraged at

impending death and may direct anger toward their care providers.

DEATH IN MIDDLE ADULTHOOD

Life-threatening disease is the most common cause of death in middle-aged adults.

These adults are more aware and accepting of death but also have a lot of fears (more than any other time in lifespan).

Most frequent causes are heart attack or stoke - both of which are sudden

DEATH IN LATE ADULTHOOD

The prevalence of death and losses around older adults makes them less anxious about dying than at any other time of life.

Suicide rate increases with age for men. Caucasian men over age 85 have the highest

rate of suicide. A major issue for seniors with a terminal

disease is whether their lives still have value and how much of a burden they are.

The Dying Child

• Terminally ill children as young as 3 years old come to know that they are dying, and that death is a final and irreversible process

• Children may not be able to talk about death but express their understanding of their approaching death in their behavior– Fear of wasting time, wanting to have things done right away– Dislike of talking about the future– Absorption with death and disease– Setting up a distance from others but acts of anger and silence

The Dying Child

•Stages:– Initial awareness of the seriousness of the illness– Learning names of various drugs and medical procedures, perceives

that he/she is seriously ill but will get better– Learns the purpose of various medical procedures and perceives that

she is always ill but will get better– After series of relapses he perceives that he will never get better– After numerous relapses and remissions understands that he/she is

dying (often associated with leaning about death of a peer with the same disease)

Feelings of a Dying Child

• Fear and anxiety– Separation from parents and other family members– Increasing anxiety of medical procedures– Increased anxiety because of feelings of fear and anxiety in their family members

• Anger– Loss of self-control and independence– Often results in developmental regress to an emotional level at which they are no loner

independent– Some children overcompensate by refusal of help from family and hospital personnel

• Sadness– Grieving loss of what they had before the illness (decline in contact with friends, absence

from social and other activities, pain, discomfort, decreasing mobility, alterations in body image etc.)

• Loneliness and Isolation– Because of mutual presence of the approaching death, there may be no opportunity for

parents and the dying child to truly share their concerns and fears and provide comfort, security, and reassurance

– Children’s feelings about death sometimes become masked and repressed

Feelings of a dying child• Often marked by mutual pretense of the approaching death• Children may want to maintain the pretense that they are feeling well

because they are afraid of being abandoned or rejected• ‘ To let children talk about death, about their fears and feelings, their

hopes and despairs, their certainties and uncertainties, their love, and hate, means we are allowing them to talk about life, their life, and we are providing them with the only possible help: the presence of another human being until the end.’

• Spiritual needs– Prominent in the lives of dying children– A positive image of what lies beyond death– Reassurance that they will be remembered

• Individual differences– Some children are resilient and playful even when their life is ending

Emotional and Physical Reasons People May Fear Death.

• Helplessness • Dependence on others • Physical faculties • Mutilation by surgery or disease • Uncontrollable pain • Being unprepared for death

Social Reasons People May Fear Death

• Fear of separation from family or home

• Fear of leaving behind unfinished tasks or responsibilities

Dr. Elizabeth Kubler-Russ

• Identified five stages of grieving that dying patients and their families and friends may experience.

• They may not be in order and may overlap or repeat a stage at times.

• Others may not experience all stages.• Stages include denial, anger, bargaining,

depression, and acceptance.

Denial

• Usually occurs when the person is first told of the illness.

• Individual’s may say,– “The tests are wrong.”– “This can’t be happening to me.”– “I don’t believe it.”

• Others don’t talk about it.• Health care workers should listen without

confirming or denying it.

Anger

• This stage occurs when the patient can no longer deny death.

• The patient may blame themselves, their loved ones, or health care workers for their illness.

• Health care workers must understand this is not a personal attack.

Bargaining

• Usually occurs when patient accepts death but wants more time to live.

• Patients turn to religion and spiritual beliefs during this period.

• They want to see their child gradate, get married, or hold a grandchild.

• Making promises to God to try and obtain more time sometimes occurs.

Depression

• This stage occurs when the patient realizes that death will come soon and they won’t be with their families any longer.

• They realize that some goals they set will not be met.

• Health care workers need to let the patient know that depression is “OK”.

Acceptance

• This is normally the final stage.• The patient understands that they are going to

die.• May complete unfinished business and try to

help those around them deal with death.• Patients will slowly get farther away from the

world and other people.• They need emotional support during this

stage.

Interventions for Health Care Professionals

• Talk as needed • Avoid superficial answers, i.e. “It’s God’s will.” or “It will be OK.”• Provide religious support as appropriate • Stay with the patient as needed • Work with the family so they might be strong enough to offer support to the dying

person.

Physical ChangesOf

Death

Respiratory System

1.Unable to oxygenate the body enough for adequate gas diffusion

2.Respirations become stridorous or noisy, leading to

“death rattle” 3. Cheyne-Stokes respiration sign of pulmonary system

failure a. Consists of alternate hyperpneic and apneic

phases

Cardiovascular System• Heart unable to pump strongly enough to keep blood moving

• Decreased blood causes decreased circulation to the body • Skin becomes cool to the touch, pale • Person appears cyanotic, possibly mottled • Failure of peripheral circulation frequently results in a drenching sweat cooling the body surface.

• Pulse becomes weak and thready, ultimately irregular • A stronger pulse typically means death is hours away • A weak, irregular pulse typically means that death is imminent in the next

couple of hours. • An apical pulse might be required.

Other Changes

• Metabolism rates decrease.• The person might retain feces or become incontinent. • Urinary output decreases. • Dying person may turn toward light as sight

diminishes. • Dying person may hear only what is distinctly spoken.• Dying person may remain consciousness or become

unconscious/comatose

Other Changes

• Some dying people rally in clarity and consciousness just prior to their death

• A person’s eyes might be open even if unconscious • Dying people might turn toward or speak to someone

who is not visible to anyone else in room • Pain might be present • Pain medication should not be withheld as person nears

death.

Right to Die• Most people with terminal illness believe that

someone with a terminal illness should be allowed to refuse measures that would prolong their life.

• This is the right to die.

• Respirators, pacemakers, and other medical devices can be withheld and the person can die with dignity.

• DNR – Do Not Resuscitate Order

Caring for the terminally ill: The Place of Death

• Most people in the United States die in hospitals.

• For the terminally ill, hospitals may not be the best places to die.

• Hospitals are impersonal, expensive, and designed to make people better and many people die alone.

Several alternatives to hospitalization have become increasingly popular in the last few decades…

In HOME CARE, an alternative to the hospital, people stay in their homes and receive comfort and treatment from their families and visiting medical staff.

• Many people prefer to die in familiar surroundings with the people and things they have loved around them.

• Home care can be very difficult for the family.

• In the final stage, people reach an accommodation stage where they pick up the pieces of their lives and move on.

• Ultimately, most people are able to live new lives, independently from the person who has died

– Form new relationships– Become more self reliant and appreciate of life

• Not everyone passes through the stages of grief in the the same order or in the exact same way

– Personality differences– Relationship with the deceased– Opportunities available for continuing their lives

Hospice Care

• This philosophy is to allow the patient to die with dignity and comfort.

• Pain is controlled so that the patient can remain active as long as possible.

• Specially trained volunteers are an important part of many hospice programs.

Advance Directives

• A general term that describes two types of legal documents.

• Living Will

• Healthcare (Medical) Power of Attorney

Living Will

• Allows a person their wishes about medical treatments for the end of life in writing in the event that they cannot communicate those wishes directly.

• Different states may use different names.

Healthcare Power of Attorney

• Also know as a “healthcare proxy,” “ appointment of a healthcare agent,” or “durable power of attorney for healthcare.”

• The person you appoint will be authorized to deal with all medical situations when you cannot speak for yourself.

(Choosing death)

Assisted suicide is a death in which a person provides the means for a terminally ill patient to commit suicide.

• Dr. Jack Kevorkian is best know for this role and has been prosecuted in the U.S.

• Laws are more accepting in other countries. • Assisted suicide is one form of EUTHANASIA, the

practice of assisting terminally ill people to die more quickly.

• Euthanasia is high controversial since it centers on decisions about who should control life.

Decisions About Ending Life…

• Some people argue that we should have the absolute right to be in control of our own lives– Freedom as an ideal in our society– Absolute right to create life (creating children),

why not ending own?• Opponents

– Morally wrong– Physicians are not accurate in predicting

outcomes• SUPPORT Study, next slide

How Long Do “Terminal” Patients Really Live?

SUPPORT study: A significant percentage of a group of 3,693 patients told they had no more than a 50% chance of living for 6 months survived well beyond this period. Why do you think this happened?