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I. Introduction

1. Death is the natural biological end to life. If we are born, we must die. Yet this knowledge produces anxiety, because it involves a loss for both the individual who is dying and for those who are left behind.  Humans tend to avoid topics and situations which produce anxiety. 

A study of more than 100 sympathy greeting cards revealed that none used the word death, dead or dying . Instead phrases like passed away, taken by God or deceased are used. 

Death is a topic which does not often come up in conversation. Sex and death have been the taboo topics in America. Victorians could talk about death, but not about sex. Now it seems just the opposite. 

We have come to believe that death belongs in the hospital, and, as a result, we are not aware that death belongs to the dying. 

2. The subject of death is tied up with religious beliefs which are diverse and emotional. We're not going to delve into religious beliefs here, but we are going to accept that these beliefs are individual. However, physical death comes to all regardless of their beliefs-- it is a natural part of life. As you will see, we have as a culture hidden death and removed its realties from our sight.

II. Dealing With Our Feelings About Death

1. What does death mean to you?

Too often we accept the fact of our own death intellectually, but not emotionally. It is very difficult to imagine not being alive--life going on without you. Death forces us to review our lives. "Has my life had meaning"? Erikson addressed this in describing the last and final stage of life: integrity or dignity versus despair. One must review his/her life and find it had meaning, or die in despair. 

Woody Allen said, "I'm not afraid to die; I just don't want to be there when it happens". People are more afraid of dying than of death. They fear the process. Will someone be with them, will they be in pain or be a burden to others?

Society  helps us deny and avoid thinking about death. Think of some of the euphemisms used to deny death: passed on, passed away, taken from us, taken home, fallen asleep, put to sleep. 

2. All of us have some concerns about our own death, and this affects our ability to deal with the elderly, the ill, the grieving, and the death of someone close to us.

Some of us have already had some experiences with death, others have not. But, sooner or later all will. We need to get in touch with our own feelings about death and try to understand ourselves. 

If you are around elderly people in your family or if you work with the elderly, you will have to deal with death. Older people die more often than younger people do. You will be confronted with people who are dying and others who are grieving.

Some people avoid being around older people, avoid nursing homes, avoid those who are dying because of their own fear of death. 

There is a misconception that the elderly are preoccupied with death. That is not true, but they often find the subject avoided when they do want to talk about it. They need an opportunity to discuss death.

 I have seen health care workers, uncomfortable with their own death, when asked by a dying patient if they were going to die, respond "now, don't talk that way, everything is going to be fine". This response denies the dying person the ability to get input on which to base decisions.

Sometimes, a mutual pretense may exist. Both parties, staff and patient, both know that the person is dying, but both act as if they do not know. Never force the topic upon a dying patient, but when asked, will you be able to respond?

II. Confronting Death                                                                  back to top

1. The dying are not dead. They need to be accepted where they are. This includes the expression of emotions, wishes and beliefs. Many times, caretakers make judgments or impose personal beliefs on the dying. Most need someone to listen to them and participate in life with them. 
   
2. Elizabeth Kubler-Ross was one of the first to try to humanize the dying process. She observed five general characteristic reactions to terminal illness. 

1. Denial -"No, not me" By denying a death sentence, the person creates a buffer around facing their death. This often provides temporary relief. 
   
2.  Anger -" Why me?" This reaction can create a situation where the person does not take personally the fact they are dying. "It just isn't fair, I always get the short end of the stick".
   
3. Bargaining- "Yes but..." The person may be bargaining for time. If I live right or eat right, perhaps I will live until some special event or time. 
   
4. Depression- "Nothing matters." At this stage, there is a great sense of loss and preparatory grief for losing it all. The person could be silent in their realized sorrow. 
   
5. Acceptance -"Yes", is a stage that is almost void of feelings.

Patients need not go through these stages in any particular order and may leave one level only to return to it at a later time. This is a framework to understand what is happening. A way to understand the experience , and not a developmental stage process. Reactions may ebb and flow. 

The first half of this video has a wonderful student's comic rendition of her theories .  

Kubler-Ross found that hope is an important element in the dying process. Not only for recovery, but for relief of pain, resolution with loved ones, and in making the last bit of life more meaningful and valuable. She called this part "dying well". 

3. Critique of Kubler-Ross

There are many critics of Kubler-Ross' work and other models to consider. Critics say that dying is not logical, but individual. People cant be fit into a mold. For some , death is sudden and these reactions may be seen in the bereaved, and this model creates a tendency to confuse what is with what should be. Some say it creates a pressure to graduate from one stage to the next. 

Read the CRITIQUES OF KUBLER-ROSS' MODEL here http://www.newworldencyclopedia.org/entry/Elisabeth_K%C3%BCbler-Ross

4. Living-Dying Interval Model is an alternative reaction to crisis. It is not based on a progression, because proponents say there is no right way to die. The task is to keep living while making the dying process as painless as possible. This model consists of three phases:

1. Acute Crisis Phase-  This is the realization of the possibility or inevitability of dying and is marked by high anxiety when the unknown is the greatest. 
   
2. Living-Dying Phase - During this phase the focus is on specific fears and life management. How will I pay off the house before I die? Who will care for my loved ones when I am gone?
   
3. Terminal Phase-This encompasses the task of letting go. Survival becomes not worth the struggle.

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Dying is a process which is individual, but sometimes commonalities exist. 

5.  Ways to Help The Dying Patient: Review Handout "Visiting the Dying, What Should I Do"?
   

1. Remember, they are people first and dying second. They have the same emotions, needs, concerns as you. Treat them as a whole person. Don't avoid appropriate human responses (disagreements, laughter, frustration). False cheerfulness is inappropriate and denies the reality of the dying process the person is facing. Accept the person's view of death and after-life even though it may conflict with your own, and share  your views only if asked. 

Be a willing listener. Help the person share fears and concerns, wishes. You don't need to have any answers. Be careful not to make decisions for the dying which they can make for themselves (regarding hospitalization, pain medications, isolation, silence, etc.). You must not assume that your wellness renders you more capable of these decisions. Everyone has a right to manage his/her own dying in his/her own way without interference and judgment. 

2. Life Review or Reminiscence

Life review and reminiscence is a process where people remember or retell their past experiences, reexamining them and integrating these experiences with his/her present life. 

This helps to bring meaning to life, reduce anxiety and prepares the person for death. It can be very healing for family members to be a part of these stories. It can be a way to teach other generations .

The ARC Gerontology Program provides a course in Reminiscence Therapy (Gero 334). It is offered in the spring of each year. 

III.  Grief

IV. Hospice Movement: See handout "What Does Hospice Believe and Hospice Interdisciplinary Team"
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1. The Hospice movement is changing the way we die in America. Hospice sees death as something expected and planned for, a celebration of that person's life. Patients must be terminal (have less than six months to live) but not necessarily from cancer as sometimes is thought. 
   
   Hospice is an interdisciplinary team consisting of nurses, social workers, aides, physical therapists, nutritionists, chaplains, volunteers, bereavement counselors and doctors that have all been specially trained in the needs of the dying patients and their families. 

A Hospice can be a designated Hospice facility, or a special unit in a hospital. More typically, Hospice comes to patients in their homes. Hospice can also be provided in Assisted Living Facilities, RCFE's or skilled nursing facilities. Hospice allows people to die either in their home or anywhere they want to die. 

Hospice provides palliative or comfort care. This type of care is accomplished through pain control, education , support and counseling. Palliative care can entail anything that makes the patient more comfortable, music, massage, special friends, specialized beds, counseling, or surgery and drugs. Curative measures are not part of the Hospice philosophy, except for secondary illnesses like urinary tract infections or other discomfort causing symptoms.  

Hospice doctors are trained in specialized pain control measures that most physicians are not. Often, dosages and frequency of dosages are higher than would otherwise be recommended to control pain in a non-terminal patient. 

2. One major hurdle Hospice has encountered is family's reluctance to make a  referral early enough in the course of a person's death. Families are hesitant to call Hospice, sometimes fearing that in doing so, they will somehow alter any chance of recovery.

V. Euthanasia and Physician Assisted Suicide 

1. What is the difference?
   

1. Euthanasia is intentional killing. The drug is given by someone other than the patient. Historically there have been two types:

voluntary or active euthanasia in which life sustaining treatment is withdrawn at the patient's request

passive euthanasia in which the doctor does nothing to prolong life 

Most people accept passive but not active euthanasia. Now, there is a third type of euthanasia, called an obitiatrist. An obitiatrist creates death, like Dr. Kivorkain.

2. Physician Assisted Suicide - This type of death is caused by the person who wants to die. He/she administers the lethal treatment. It is provided by the doctor.  

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2. Controversy And Debate- Just the Facts!

The controversy centers around two main issues:

1. The  "pro" side argues that it is cruel to prolong intense suffering. These proponents argue that people should have the right to decide whether or not their lives are worth living.  
   
2. The side that opposes these practices  fear that the law would not limit the practice to mercy killings. They fear legislation that would  empower people to take lives, but lack protection from abuses. These people feel that the bureaucracy could not police such a program. 
   

They fear that the practice may be extended and be broadened to affect the lives of others. For example, would the system discriminate against people whose care is costly such as diabetics, quads, or others with physical sufferings? How do we know who the reversible ill are from the dying? Would  we create a pressure to the vulnerable population to justify their existence?

3. Vulnerable Issue

4.  Religious Issue

Many oppose the practices because they feel that assisting in a death is against God's laws. The thought is that only God gives life, and, therefore, only God should be able to take it away. Some also feel that the suffering that happens at the end of life brings one closer to God. 

On A Personal Note:
As a person who originally favored  physician assisted and other forms of euthanasia, I have changed my opinion in recent years. 

My husband and I have cared for his 90-year-old parents for several years. When his mother first became ill (after a fall), he was devastated at the thought of her dying. 

The five or six years of his involvement in her care has prepared him for her inevitable death.  Mother and son have healed old wounds, talked about unspoken family issues, and as she slips away, the process has prepared both of them for her death. 

She has had time to disengage, allow family members to care for her needs and through reminiscence and life review she had an opportunity to find  peace with her life. 

Without the gift of time she would have died leaving many unspoken words and unhealed memories.  I have seen great healing happen in the end stages of life, and, for that reason, I have come to oppose the practices. 

 

VI. Right-to-Die and Advance Directives

1. Without clear direction from the patient or family, it is difficult for anyone to know what the health care wishes might be regarding tube feedings or hydration for an individual.

Health Care professionals need to know a persons references; do nothing or do everything. 

An Advance Directive is a document people write up in advance, directing others as to their wishes concerning medical care. It outlines how they want to be treated when dying.

California provides two different forms regarding health care directions; The Advance Health Care Directive  and the one resulting from the Natural Death Act and is commonly known as the "Living Will".

1. The Advance Health Care Directive is a new form in California that replaces the Durable Power of Attorney for Health Care. These forms do not require an attorney and can be filled out by an individual. This document names an agent to make health care decisions and provides some guidance for your wishes.
   

2. Living Will – For some people it may also be appropriate for them to complete a Living Will. However, lawyers say that many people are uncomfortable with the broad scope of the form after they re-read it.

The Living Will is a written document in which an individual conveys his or her desires to die a natural death and not be kept alive by artificial means.

The problems lie in trying to anticipate all possible scenarios. For example, one might say, "Never put me on artificial breathing machine". Yet, in the event of an accident, a temporary condition, such as a crushed chest, might need artificial breathing for a short period of time to correct the insult. 

Many people who ask for no life-sustaining treatments fail to realize that some medical conditions are reversible after a short treatment using life-sustaining measures, such as in shock or some traumas like car accidents.

Unlike the Advance Health Care Directive, the wishes in this document are not legally enforceable in California and are subject to the willingness of the health care provider. If a doctor encounters a family who wants everything done and a Living Will exists stating no heroic measures be taken, most physicians will abide by a family's wishes. 

Most experts agree that every Californian should have an advance directive-- but not necessarily a Living Will.

You can also view a copy of the Advance Health Care Directive at California State Department of aging web site.  http://www.ag.ca.gov/consumers/pdf/AHCDS1.pdf.

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3.The Checklist

It is important to periodically review your records and decide whether you need to prepare a summary of your property and debts so that others can effectively administer your estate if you are disabled or when you die.

If you are disabled before you die, your family must know about your debts and insurance coverage, so they can make payments as they become due.

A recent loan application, or tax return is a good starting point to identify your assets, but they won’t include some important property.

Will your family know the following?

Location of vital documents (birth, death, marriage, divorce, adoption).

Location of employment records, and military records, if applicable.

List of real estate owned (including partnerships/joint ownership).

Payment information for mortgages, taxes, and insurance.

Location of deeds, loan documents, debts you owe and what others owe to you- safety deposit boxes or storage lockers.

Health insurance information, Long-Term care insurance, advance directives.

List of valuable personal property (furniture, artwork, other personal property that has special value).

Consider that family members who already know about these things may not outlive you.

List of bank and investment/security accounts

Names of advisors (accountant, attorney, insurance agent

Bonds, stock, copyrights, patents or trademarks

Burial/Funeral plans, pre-arrangements

Description of vehicles, location of title, loan and insurance info

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Be sure to return to the "Assignment Link" for this weeks discussion board instructions