T F The family concerns are of highest priority in dying.

T F Worldwide, most people experience death at home.

T F Is is not legal to withhold feeding.

T F Denial is always fundamentally wrong.

 1. What is death, dying and palliative care? 

Andy Rooney wrote that "death is just a distant rumor to the young." Death is the end of this life. For some it is their final end, for many others, the beginning of another life. Dying is the process of passing out of this life.

In the last hundred years, many circumstances of death in the USA have changed:

• In 1900, 80% of people died at home, in 1995, 77% died in medical institutions.

• People live much longer and so they are older when they die.

• There are more decisions to be made about assisted breathing, feeding etc.

• Now over 90% of pains may be controlled by medication.

But worldwide in 1990, 89% of people died at home. A good end-of-life event is dying painlessly, peacefully and ready for it.

According to the World Health Organization, palliative care is "the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount."  

"The goal of palliative care is achievement of the best quality of life for the patients and their families."

 2. How can you give end-of-life care?

2.1 You can assist in end-of-life decision making. Many of these and others may have been dealt with in the Advance Directives, a legal document that deals with the future of a persons health care decisions. See http://www.uslivingwillregistry.com/forms.shtm  and http://www.caringinfo.org/i4a/pages/Index.cfm?pageid=3425.  The end-of-life decision in this document is the instruction whether to prolong life or not. It is recommended that all individuals prepare these documents. Other options may not have been dealt with and may include:

• Should the person be fed by spoon, through a tube through the nose, I.V., or not at all?

• Should pain medication (like morphine) be administered and at what level?

• Should the person be resuscitated if his/her heart stops (code)?

• Should all treatment be continued or withdrawn?

• What are the realistic options in medical care?

• What community resources can assist the family during this time?

• What support may enhance the dying experience (music, hand-holding, prayer, scripture-reading, etc.)?

2.2  You may assist in pain and symptom control. When a person is dying at home, the family may have some freedom in this. While the administration of medication in medical institutions is the responsibility of the medical team, persons giving palliative care may  make tactful suggestions. Pain may be controlled by massage, hot or cold packs, medication etc. Review these slides on pain management.

Morphine is often the medication of choice. While some are concerned about addiction, sedation and respiratory depression, these are generally not valid problems since the person is usually within imminent death.

Signs of acute pain include grimaces of the face, crying out, stiffening up, or a description of the pain. Chronic pain may be harder to observe and may not be communicated.

Symptoms other than pain often are anxiety, nausea, respiratory distress, depression, fatigue or diarrhea.

Dr. Ira Byock suggests 5 things to say to the dying: Forgive me. I forgive you. Thank you. I love you. Good-bye. 

3. What changes occur during dying?

There are many physical changes in dying. They are normal and usually do not cause discomfort:

• The skin may turn pale, darker, blue, purple, patchy.

• The body temperature may fall, or in some cases rise.

• Blood pressure is lower and may be harder to hear.

• The sensation of being cold or hot may be lost.

• Appetite may be lost

• The eyes may glaze over, not blink, stay open, or not see.

• The mouth may be dry and the lips cracked. (they may be swabbed)

• Urine flow may stop or be dark.

• Control of bowels and bladder may be lost.

• Breathing may be irregular and  gasping for air (guppy breathing).

• Fluid in the lungs may cause a death rattle.

• There may be more sleepiness and weakness (cannot speak or raise the hand).

• The sense of hearing (and possibly touch) are the last to go.

In dying, a persons' world gets smaller and smaller. By now they have lost their job, their ability to go shopping, to go outside, to go to the bathroom, to control their body, to control anything.

Death is evident when there is no pulse, blood pressure, breathing and brain function for several minutes, and the pupils of the eyes stay wide open and do not change. The exact definitions and criteria differ in different states.

 4. How can you help with the spiritual problems of dying?

"You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die." Dame Cicely Saunders, Founder of the Modern Hospice Movement

Spirituality is a result of the wisdom we have gleaned over our life about our existence and our relationship to living things.  It is what gives us meaning and purpose to our lives.  Often spirituality is a primary component of religion but can exist also for those that do not have a set religion.

Explore the LearnWell open course on Spiritual Health.

There are guidelines for taking a spiritual history.  A number of instruments on spirituality are presented here.

5. How can you deal with the five stages of dying?

1. Not me! Denial

Some denial help in coping with the problem one little bit at a time. It is a normal reaction and is usually temperary. But there is also destructive denial that needs to be allowed and talked out.

2. Why me? Anger

Life is unfair and can not always be understood with reason. There is a feeling of helplessness. Many times the anger should be vented and later redirected, if possible. The anger should be respected, understood and accepted.

3. If you'll, then I'll... Bargaining

The patient needs to be listened to and reassured of his or her worth. At times, other suggestions may help. Do not be judgmental.

4. What's the use? Depression

Depression and crying are normal in dying. Sometimes it is accompanied by guilt. Accept and listen.  It is acceptable to be sad. And it is not always appropriate to be a cheerleader.

5. Yes, me. Acceptance

This is not a giving up, it is a relieve that the suffering is over. Often there is an inner peace. At last, there is hope. "It is all right." Be there with the patient, if appropriate holding his/her hand.

Underlying these stages are often the fear of the unknown, of loneliness, of dependence, of financial impoverishment, of pain, of loss of identity, of regression. Assurance may be given that their needs will be met through the various support services like social workers, medical professionals, chaplains and family.

Interview on Death and Dying.

6. How can you deal with the some of the following cases?

Nancy B   Candura  Do Not Intubate Me  Do Not Resuscitate My Mother  Cruzan  Malette  Brain Death