Handbook for Mortals : Guidance for People Facing Serious Illness

by Joanne Lynn; Joan Harrold; The Center to Improve Care of the Dying

• ISBN13: 9780195146011
• ISBN10: 0195146018
• Format: Paperback
• Copyright: 2001-10-25
• Publisher: Oxford University Press, USA

Summary

This guide warmly addresses those who wish to approach the final years of life with a greater awareness of what to expect and how to make the most of it with growth, comfort and reflection. Illustrations.

Author Biography

Joanne Lynn, M.D., is Director of the RAND Center to Improve Care of the Dying and President of Americans for Better Care of the Dying. Joan Harrold, M.D., is Medical Director of the Hospice of Lancaster County.

Table of Contents

Foreword	xiii
Rosalynn Carter
Introduction	1	(4)
Living With Serious Illness	5	(10)
Am I ``living with'' or ``dying of''?
How we die -- then and now
Practice, practice, practice
Planning for uncertainty
The power of words
Not particularly interested in dying...
Decisions to make, decisions to wait
No one ``right way''
Enduring and Changing	15	(12)
Mourning your losses
Seeing yourself more clearly
Coping with changes in appearance
Taking care of yourself
Setting realistic goals
About relationships
Life is changing, but...
Finding Meaning	27	(12)
Religion and relationships
Meaning and loss
Chaplains and others who can help
Helping Family Make Decisions and Give Care	39	(8)
Families deciding together
Family caregiving
How can a caregiver know if things are out of control?
What to do when the caregiver is overwhelmed
How do you find support groups?
Is there anything good about caregiving?
Getting the Help You Need	47	(10)
How to find help and advice
Call your local Office on Aging
Getting the help of a case manager
When your family needs a break
Getting your wishes followed at home
When you have help in your home
What to do when things don't go well
A guide to settings and services
How do I pay for these services?
Talking With Your Doctor	57	(14)
Know what you should expect from your doctor
Getting the most out of each visit with your doctor
Talking with your doctor -- special situations
When you are hesitant to ask questions
Controlling Pain	71	(14)
Types of pain
Choosing the right pain medicine
Different ways to take pain medicine
Doses of pain medicine
A few rules about pain management
How often to take pain medicine
Fear of addiction
Side effects of pain medications
More medications that relieve pain
Managing Other Symptoms	85	(8)
``I feel very short of breath, as if I just can't breathe.''
``I just can't eat.''
``What are bed sores and how can I prevent them?''
``I want to stay awake; there's so much yet to do.''
``Some people are so depressed, but I'm just so anxious.''
``Should I be worried about getting confused or just being `out of it'?''
``Remind me -- can anything good happen?''
Learning About Specific Illnesses	93	(26)
How long do I have?
Heart disease
Cancer
Lung disease: emphysema and chronic bronchitis
Kidney failure
Liver failure
HIV/AIDS
Dementia
Dying while very old
Planning Ahead	119	(10)
``Why should I make plans now?''
``How can I be sure my choices will be followed?''
``What else matters with advance directives?''
``I had a living will in Ohio and now I'm in Florida. Do I need a new one?''
``What about planning for where to live when I am more disabled?''
``What about planning my finances?''
``Why do I need someone to speak for me?''
``My mother had a living will but the doctor ignored it. Is this common?''
``Is it legal to refuse life-sustaining treatment?''
``What else should I plan for?''
``All of this is sort of depressing, isn't it?''
Forgoing Medical Treatment	129	(10)
Thinking about the issues
Stopping treatment
Time-limited trials
When food seems like love
The benefits of dehydration at the end of life
Tube feeding and the dementia patient
Artificial feeding and the permanently unconscious patient
Choosing to stop eating and drinking
Decisions about ventilators
Decisions about resuscitation
The many meanings of ``DNR''
Other decisions to forgo treatments
Hastening Death	139	(10)
Considering suicide: When you just can't face another day
``I want to spare my family.''
``I want to be sure to die comfortably. Wouldn't suicide be a guarantee?''
``Don't the laws now allow physician-assisted suicide?''
``What about Oregon?''
``What are some of the arguments against legalizing physician-assisted suicide?''
``What arguments support physician-assisted suicide?''
``I don't trust doctors.''
``Outside of Oregon, is there any physician-assisted suicide?''
Coping With Events Near Death	149	(12)
``How will I know when death is getting close?''
``What should family and friends do when death is close?''
``Is it important to be there at the moment of death?''
``How does a family member know that the person has died?''
``What happens then?''
``Can family keep some information out of the obituary?''
``How long can one wait before burial or cremation?''
``Can family know what was learned in an autopsy before burial or cremation?''
``How does a family follow religious and other important traditions?''
``What does one do at a `viewing' or at `visiting hours'?''
``Are there things that must be done right after the burial or cremation?''
The Dying of Children	161	(10)
Infants
Sudden causes of childhood death
Fatal chronic illness with intact intellect
Rare disorders
Disorders with impaired consciousness
Conclusion
Dying Suddenly	171	(8)
Violence
Accidents
Natural disasters
Suicide
Multiple deaths
During chronic illness or recuperation
Sudden Infant Death Syndrome
Some special issues -- police, autopsy, and organ donation
Sudden death
Enduring Loss	179	(16)
Grieving your own dying
Telling your story
The cycle of grief
Experiencing grief -- family and loved ones
Living with loss of a loved one
Music and mourning
Do children grieve?
Children's understanding of death: what to expect and how to help
What do you do to comfort a child?
Reinvesting in life after the loss of someone you love
Additional Resources	195	(25)
Contents
Issue-specific
Diseases
General information and resources for reform
Personal resources
Acknowledgments	220	(9)
Index	229