Handbook for Mortals: Guidance for People Facing Serious Illness

Contents......Page 8
Foreword......Page 14
Introduction......Page 16
1. LIVING WITH SERIOUS ILLNESS......Page 20
Am I \"living with\" or \"dying of\"?......Page 22
How we die — then and now......Page 23
Planning for uncertainty......Page 25
The power of words......Page 27
Not particularly interested in dying.........Page 28
No one \"right way\"......Page 29
2. ENDURING AND CHANGING......Page 30
Mourning your losses......Page 34
Seeing yourself more clearly......Page 35
Coping with changes in appearance......Page 36
Taking care of yourself......Page 37
About relationships......Page 39
Life is changing, but.........Page 41
3. FINDING MEANING......Page 42
Religion and relationships......Page 43
Meaning and loss......Page 45
Chaplains and others who can help......Page 48
4. HELPING FAMILY MAKE DECISIONS AND GIVE CARE......Page 54
Families deciding together......Page 55
Family caregiving......Page 56
How can a caregiver know if things are out of control?......Page 59
What to do when the caregiver is overwhelmed......Page 60
Is there anything good about caregiving?......Page 61
5. GETTING THE HELP YOU NEED......Page 62
Getting the help of a case manager......Page 63
Getting your wishes followed at home......Page 64
When you have help in your home......Page 65
A guide to settings and services......Page 66
How do I pay for these services?......Page 71
6. TALKING WITH YOUR DOCTOR......Page 72
Know what you should expect from your doctor......Page 73
Getting the most out of each visit with your doctor......Page 76
Talking with your doctor — special situations......Page 79
When you are hesitant to ask questions......Page 85
7. CONTROLLING PAIN......Page 86
Types of pain......Page 87
Choosing the right pain medicine......Page 89
Different ways to take pain medicine......Page 91
Doses of pain medicine......Page 92
A few rules about pain management......Page 93
Fear of addiction......Page 95
Side effects of pain medications......Page 96
More medications that relieve pain......Page 98
\"I feel very short of breath, as if I just can\'t breathe.\"......Page 100
\"I just can\'t eat.\"......Page 103
\"What are bed sores and how can I prevent them?\"......Page 105
\"Some people are so depressed, but I\'m just so anxious.\"......Page 106
\"Remind me — can anything good happen?\"......Page 107
9. LEARNING ABOUT SPECIFIC ILLNESSES......Page 108
How long do I have?......Page 109
Heart disease......Page 111
Cancer......Page 114
Lung disease: emphysema and chronic bronchitis......Page 117
Kidney failure......Page 121
Liver failure......Page 123
HIV/AIDS......Page 125
Dementia......Page 128
Dying while very old......Page 130
10. PLANNING AHEAD......Page 134
\"Why should I make plans now?\"......Page 135
\"How can I be sure my choices will be followed?\"......Page 138
\"I had a living will in Ohio and now I\'m in Florida. Do I need a new one?\"......Page 139
\"What about planning my finances?\"......Page 140
\"Why do I need someone to speak for me?\"......Page 141
\"Is it legal to refuse life-sustaining treatment?\"......Page 142
\"All of this is sort of depressing, isn\'t it?\"......Page 143
11. FORGOING MEDICAL TREATMENT......Page 144
Thinking about the issues......Page 145
Stopping treatment......Page 146
Time-limited trials......Page 147
The benefits of dehydration at the end of life......Page 148
Artificial feeding and the permanently unconscious patient......Page 149
Choosing to stop eating and drinking......Page 150
Decisions about ventilators......Page 151
Decisions about resuscitation......Page 152
Other decisions to forgo treatments......Page 153
12. HASTENING DEATH......Page 154
Considering suicide: When you just can\'t face another day......Page 155
\"I want to spare my family.\"......Page 157
\"Don\'t the laws now allow physician-assisted suicide?\"......Page 158
\"What about Oregon?\"......Page 159
\"What are some of the arguments against legalizing physician-assisted suicide? \"......Page 160
\"I don\'t trust doctors.\"......Page 161
\"Outside of Oregon, is there any physician-assisted suicide?\"......Page 163
13. COPING WITH EVENTS NEAR DEATH......Page 164
\"How will I know when death is getting close? \"......Page 165
\"Is it important to be there at the moment of death?\"......Page 166
\"How does a family member know that the person has died?\"......Page 167
\"What happens then?\"......Page 168
\"How long can one wait before burial or cremation?\"......Page 172
\"How does a family follow religious and other important traditions?\"......Page 173
\"What does one do at a \'viewing\' or at \'visiting hours\'?\"......Page 174
\"Are there things that must be done right after the burial or cremation?\"......Page 175
14. THE DYING OF CHILDREN......Page 176
Infants......Page 177
Sudden causes of childhood death......Page 179
Fatal chronic illness with intact intellect......Page 180
Rare disorders......Page 183
Disorders with impaired consciousness......Page 184
Conclusion......Page 185
15. DYING SUDDENLY......Page 186
Violence......Page 187
Accidents......Page 188
Suicide......Page 189
During chronic illness or recuperation......Page 190
Sudden Infant Death Syndrome......Page 191
Some special issues — police, autopsy, and organ donation......Page 192
Sudden death......Page 193
16. ENDURING LOSS......Page 194
Grieving your own dying......Page 195
Telling your story......Page 196
The cycle of grief......Page 198
Experiencing grief— family and loved ones......Page 200
Living with loss of a loved one......Page 202
Music and mourning......Page 203
Children\'s understanding of death: what to expect and how to help......Page 205
What do you do to comfort a child?......Page 206
Reinvesting in life after the loss of someone you love......Page 208
17. ADDITIONAL RESOURCES......Page 210
Contents......Page 212
Issue-specific......Page 213
Diseases......Page 224
General information and resources for reform......Page 231
Personal resources......Page 234
Acknowledgments......Page 235
A......Page 244
B......Page 245
C......Page 246
D......Page 247
E......Page 248
H......Page 249
I......Page 250
M......Page 251
N......Page 252
P......Page 253
R......Page 254
S......Page 255
T......Page 256
Y......Page 257