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A Guide to End of Life CareHome


Living With Serious Illness

Introduction
Things to do when time may be short
Am I "living with" or "dying of" ?
How we die -- then and now
Planning for uncertainty
Talking with a sick person
Not particularly interested in dying
Decisions to make, decisions to wait


Enduring And Changing

Introduction
Overview of the changes that are happening
Rituals to mark transitions
Mourning your losses
Seeing yourself more clearly
Coping with changes in appearance
Taking care of yourself
Setting realistic goals
About relationships


Finding Meaning

Introduction
Spirituality, religion, and relationships
Four R's for the spirit
Grief, anger, and loss
Shaping meaning: a few ideas
Chaplains and others who can help
Questions to ask of hospitals and hospices
Religious rituals: a sampler
Night Light: an essay


Helping Family and Loved Ones

Introduction
Decisionmaking for family and loved ones
Being a caregiver -- what to expect
Rest and renewal tips for caregivers
How can a caregiver know if things are out of control ?
What to do when the caregiver is overwhelmed
How to help caregivers
How to find support groups
Is there any good news about caregiving ?


Talking With Your Doctor

Introduction
Know what you should expect from your doctor
Choosing a doctor
Getting the most out of each visit with your doctor
Dress for success
Set the stage for a successful conversation
Situations: "The social pleasantry"
Situations: "The useful conversation"
Situations: "I read somewhere"
Situations: "Tell me what to do"
Situations: "I don't want to know"
When you are hesitant to ask questions


Managing Other Symptoms

Introduction
Shortness of breath
Mouth dryness
Digestive system problems
Bed sores
Fatigue
Depression and anxiety
Confusion


Learning About Specific Illnesses

Introduction
Talking About Your Prognosis
Questions You Want to Have Answered
Keeping Up With Your Prognosis
Concerns About Heart Disease
Concerns About Cancer
Concerns About Lung Disease: Emphysema and Chronic Bronchitis
Concerns About Kidney Failure
Concerns About Liver Failure
Concerns About HIV/AIDS
Concerns About Dementia
Dying When Very Old



Planning ahead

Introduction
What If? Prepare By Talking About Plans Today
Definitions in Advance Care Planning
Talking To Family AND Completing Forms
Questions and Answers About Advance Directives
Questions To Ask Your Doctor To Help You Plan Ahead


Forgoing Medical Treatment

Introduction
Thinking about life-sustaining treatments
Trial of treatment
Stopping treatment


Tube Feeding (Fluids and Food)

Introduction - Why is it hard to let a patient go without eating ?
When are feeding tubes beneficial ?
Can you try it for a while and then stop ?
Benefits of not using artificial methods
The benefits of dehydration at the end of life
Tube feeding and the dementia patient
Tube feeding the unconsious patient
Choosing to stop eating and drinking


Decisions About Resuscitation (CPR)

Introduction - Decisions about resuscitation (CPR)
What can you do to avoid CPR ?
The many meanings of "DNR"


Decisions About Ventilation

Decisions about ventilators


Hastening Death

Introduction
Distinguishing Suicide from Physician-Assisted Suicide
Considering suicide: When you just can't face another day
How can I spare my family from suffering
Won't suicide guarantee a comfortable death?
Don't the laws now allow physician-assisted suicide?
What about Oregon?
What arguments support physician-assisted suicide?
What if I can't find a doctor I trust?
"Outside of Oregon, is there any physician-assisted suicide?"


Coping With Events Near Death

Introduction - Overview of events near death
How to know if someone is close to death
What to do when death is close
About being there at the moment of death
How to determine if the person has died
Decisions and activities after death
Decisions about autopsies
Estates and wills


Questions About Funerals

Introduction - What is the value of advance planning?
What will be done with the body ?
How long to wait before burial or cremation
Religious and family traditions
Planning details of a service
Viewings and visiting hours
After the burial or cremation
Death notices and obituaries


Adapted from The Handbook for Mortals: Guidance for People Facing Serious Illness, by Joanne Lynn and Joan Harrold, copyright by Joanne Lynn, used by
permission of Oxford University Press.
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