The Life and Death Dilemma: Families Facing Health Care Choices

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Overview

You might be standing by the bedside of an ill or dying family member, facing agonizing moral and medical choices. Or you may be struggling with a disability, asking questions that seem to have no answers. Where can you find practical encouragement and realistic perspective to help you make the best decisions? Joni Eareckson Tada, herself a quadriplegic, helps you and your family tackle the hard questions about death, illness, and suffering, such as: - Is it ever right to choose death, either for yourself or a ...
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Overview

You might be standing by the bedside of an ill or dying family member, facing agonizing moral and medical choices. Or you may be struggling with a disability, asking questions that seem to have no answers. Where can you find practical encouragement and realistic perspective to help you make the best decisions? Joni Eareckson Tada, herself a quadriplegic, helps you and your family tackle the hard questions about death, illness, and suffering, such as: - Is it ever right to choose death, either for yourself or a suffering loved one? - How can I make the best decisions in a medical crisis? - Where is God in the unanswerable questions? - Are our rights being protected? Stories of real people who have faced life-and-death decisions, practical suggestions for coping in crisis, and scriptural insight on the meaning of life help you find hope and answers in difficult situations. From the legal facts to the human factor, Joni brings a unique perspective to what makes life worth living and how to make health care choices with dignity, wisdom, and compassion. The Life and Death Dilemma, written with families' needs in mind, offers help and insight for those who are disabled, dying, or terminally ill. Complete with practical questions at the end of each chapter and full of relevant case studies, it offers help and guidance through one of the toughest issues families must face.

Is it ever right to choose death? What's the difference between murder and mercy? This book gets to the gut issues every family inevitably encounters. Written by someone acquainted with suffering, this work offers the practical, biblical answers families and individuals need for the agonizing questions they must face. Includes discussion guide.

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Product Details

  • ISBN-13: 9780310585718
  • Publisher: Zondervan
  • Publication date: 4/27/1995
  • Edition description: REV
  • Edition number: 2
  • Pages: 196
  • Product dimensions: 5.63 (w) x 8.50 (h) x 0.50 (d)

Meet the Author

Joni Eareckson Tada is founder and CEO of Joni and Friends, an organization that accelerates Christian outreach in the disability community. Joni and Friends provides practical support and spiritual help to special needs families worldwide, and equips thousands of churches in developing disability ministry. Joni is the author of numerous best-selling books, including When God Weeps, Diamonds in the Dust, A Lifetime of Wisdom, and A Step Further, winner of the Gold Medallion Award. Joni and her husband, Ken, have been married for over 30 years. For more information on Joni and Friends, visit www.joniandfriends.org
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Read an Excerpt

1

There Are Answers

Any idiot can face a crisis; it's this day to day living that wears you out.

ANTON CHEKHOV

Chekhov's words were no doubt intended to be a backhanded encouragement. They elicit a knowing smile from those of us facing the day-to-day struggles of modern life--mortgages, diapers, cranky bosses, sibling fights, aches, and pains. Such mundane troubles wear us out, and a crisis now and then can seem a welcome diversion.

But what would Chekhov say to people facing a crisis that had become day to day?

What would Chekhov say to people like Sharon:

My father had Parkinson's disease for many years. He became dangerous to himself and to my mother to the point that the doctor put him into the hospital for surgery for prostate problems and then into a nursing home. At that time we were told he also had Alzheimer's disease.

After four years of being in a coma (brought on by undetected diabetes), amputation of first a toe, then a leg, there would come the amputation of the other leg and both hands. He had been in a coma for months but showed extreme pain in his facial gestures. He had not recognized me for about four to five years. My father was a wonderful man, husband, poppa, and grandpa who was loved by all.

He was also a proud man and very self-sufficient. It was so sad to see his weakness take away every part of him except breath--due to feeding tubes and life support.

Sharon and her mom faced life-and-death questions on a daily basis for four years. "Do we continue treatments?" "Do we 'pull the plug'?" "Do we remove the feeding tube?" I wonder if Chekhov pictured such questions being answered by "any idiot."

And what would Chekhov say to people like Jim and Julie?

Julie endured eight surgeries and biopsies and four regimens of chemotherapy. We experienced the dread and terror of two years of watching Julie receive, and then react to, those powerful drugs.

She lost her hair three different times. She would get deathly sick. Her face would turn white, her eyes dark. Her fingernails became knurled and black. Her mouth and entire GI track would break out in open, bleeding ulcers. Her white blood-cell count was often below 1000. A common cold could have killed her.

She underwent a full course of radiation and a six-week, risky bone-marrow transplant. At one point, she had hanging over her, thirteen IV bottles filled with powerful drugs and antibiotics. We also experienced five unsuccessful trips out to the National Cancer Institute. Their state-of-the-art experiment failed.

Jim and Julie lived in a health care crisis for seven years before Julie went home to heaven. For them there was always the wondering: "Will this drug work?" "Is the cancer really gone?" "Do we try this risky experiment?" They faced these questions, all while raising four kids and serving in full-time ministry.

And what would Chekhov say to Debbie:

I am a mother of three beautiful triplet girls. They were born three months early, despite fourteen weeks of bed rest and medication to try to prevent premature delivery. As a result of their extreme prematurity, two of the girls are handicapped.

The girls are two years old now and I am having a hard time trying to make sure everyone gets what she needs. Amanda is a normal two-year-old; Jennifer cannot crawl, sit up, or walk but mentally seems to be about fifteen months; and Rachel can sit up and crawl but mentally seems to be ten-twelve months. Both Jennifer and Rachel do not eat and need g-tube feedings (feeding through a tube into the stomach) and medications around the clock besides physical therapy, occupational therapy, speech therapy, and feeding therapy. Everything I do is devoted to and revolves around them and their needs, but I still go to bed at night knowing how much better they could be if I could do more.

Our church was great in the beginning, and people were always helping me, but as the girls showed evidence of lasting problems, the help stopped. The problem is that I need help now more than ever. I have had a nurse in the home twenty-four hours a day for two years, but they are cutting that down to nothing by Christmas because the girls are off oxygen and their ventilators.

To top everything off, right now the girls are in a rehabilitation facility for three months for intense feeding therapy. They are miserable there, and I have had to put Amanda in day care so I can be there for Jen and Rachel. We have no family nearby to help with all this.

Debbie is looking ahead to years of daily crises of disability with her kids. She and her husband will ask: "How will the kids get an education?" "Where will the money come from to pay for therapy?" "Are we ever going to get a break just for us?"

We Are in a Dilemma

Crises like the ones just described are being rehearsed everywhere. Twenty-eight years in a wheelchair has introduced me to the world of advocacy, and with it, thousands of people who were either sinking into or surfacing out of suicidal despair. Decades of visiting hospitals and rehab centers has introduced me to the business executive with Lou Gehrig's disease whose body was shrinking and shriveling; to the young athlete paralyzed from a spinal cord injury and living in a nursing home; to the Vietnam veteran coping with a strange new mental illness; and to the teenager with cerebral palsy sitting on the sidelines, watching her classmates date, and drive cars.

These crises are not private. While straining to cope with their own pain, people are learning that they are part of a confusing debate in society over medical issues ranging from physician-assisted suicide to rationed health care. Along with advocates on both sides of the issue, they are learning technical distinctions between words like nonvoluntary euthanasia and active euthanasia. Technological advances in how we can treat people and keep them alive have added to the confusion surrounding the debate.

The pain and confusion expressed by people in crisis has made it fashionable (and compassionate according to some) to talk about a simple yet deadly solution: "Give it up. It's not worth the pain."

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Table of Contents

Contents
Foreword
Special Thanks
PART ONE: Facing the Dilemma
1.There Are Answers
2.What Are the Questions?
3.God Sets the Standards
PART TWO: Does It Matter?
4.Your Decision Matters to Others
5.Your Decision Matters to You
6.Your Decision Matters to the Enemy
7.Your Decision Matters to God
PART THREE: You Can Have the Mind of Christ
8.It’s Time to Decide
9.Ending Well
10.Living Victoriously
Notes
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First Chapter

1
There Are Answers
Any idiot can face a crisis; it's this day to day living that wears you out.
ANTON CHEKHOV
Chekhov's words were no doubt intended to be a backhanded encouragement. They elicit a knowing smile from those of us facing the day-to-day struggles of modern life--mortgages, diapers, cranky bosses, sibling fights, aches, and pains. Such mundane troubles wear us out, and a crisis now and then can seem a welcome diversion.
But what would Chekhov say to people facing a crisis that had become day to day?
What would Chekhov say to people like Sharon:
My father had Parkinson's disease for many years. He became dangerous to himself and to my mother to the point that the doctor put him into the hospital for surgery for prostate problems and then into a nursing home. At that time we were told he also had Alzheimer's disease.
After four years of being in a coma (brought on by undetected diabetes), amputation of first a toe, then a leg, there would come the amputation of the other leg and both hands. He had been in a coma for months but showed extreme pain in his facial gestures. He had not recognized me for about four to five years. My father was a wonderful man, husband, poppa, and grandpa who was loved by all.
He was also a proud man and very self-sufficient. It was so sad to see his weakness take away every part of him except breath--due to feeding tubes and life support.
Sharon and her mom faced life-and-death questions on a daily basis for four years. 'Do we continue treatments?' 'Do we 'pull the plug'?' 'Do we remove the feeding tube?' I wonder if Chekhov pictured such questions being answered by 'any idiot.'
And what would Chekhov say to people like Jim and Julie?
Julie endured eight surgeries and biopsies and four regimens of chemotherapy. We experienced the dread and terror of two years of watching Julie receive, and then react to, those powerful drugs.
She lost her hair three different times. She would get deathly sick. Her face would turn white, her eyes dark. Her fingernails became knurled and black. Her mouth and entire GI track would break out in open, bleeding ulcers. Her white blood-cell count was often below 1000. A common cold could have killed her.
She underwent a full course of radiation and a six-week, risky bone-marrow transplant. At one point, she had hanging over her, thirteen IV bottles filled with powerful drugs and antibiotics. We also experienced five unsuccessful trips out to the National Cancer Institute. Their state-of-the-art experiment failed.
Jim and Julie lived in a health care crisis for seven years before Julie went home to heaven. For them there was always the wondering: 'Will this drug work?' 'Is the cancer really gone?' 'Do we try this risky experiment?' They faced these questions, all while raising four kids and serving in full-time ministry.
And what would Chekhov say to Debbie:
I am a mother of three beautiful triplet girls. They were born three months early, despite fourteen weeks of bed rest and medication to try to prevent premature delivery. As a result of their extreme prematurity, two of the girls are handicapped.
The girls are two years old now and I am having a hard time trying to make sure everyone gets what she needs. Amanda is a normal two-year-old; Jennifer cannot crawl, sit up, or walk but mentally seems to be about fifteen months; and Rachel can sit up and crawl but mentally seems to be ten--twelve months. Both Jennifer and Rachel do not eat and need g-tube feedings (feeding through a tube into the stomach) and medications around the clock besides physical therapy, occupational therapy, speech therapy, and feeding therapy. Everything I do is devoted to and revolves around them and their needs, but I still go to bed at night knowing how much better they could be if I could do more.
Our church was great in the beginning, and people were always helping me, but as the girls showed evidence of lasting problems, the help stopped. The problem is that I need help now more than ever. I have had a nurse in the home twenty-four hours a day for two years, but they are cutting that down to nothing by Christmas because the girls are off oxygen and their ventilators.
To top everything off, right now the girls are in a rehabilitation facility for three months for intense feeding therapy. They are miserable there, and I have had to put Amanda in day care so I can be there for Jen and Rachel. We have no family nearby to help with all this.
Debbie is looking ahead to years of daily crises of disability with her kids. She and her husband will ask: 'How will the kids get an education?' 'Where will the money come from to pay for therapy?' 'Are we ever going to get a break just for us?'
We Are in a Dilemma
Crises like the ones just described are being rehearsed everywhere. Twenty-eight years in a wheelchair has introduced me to the world of advocacy, and with it, thousands of people who were either sinking into or surfacing out of suicidal despair. Decades of visiting hospitals and rehab centers has introduced me to the business executive with Lou Gehrig's disease whose body was shrinking and shriveling; to the young athlete paralyzed from a spinal cord injury and living in a nursing home; to the Vietnam veteran coping with a strange new mental illness; and to the teenager with cerebral palsy sitting on the sidelines, watching her classmates date, and drive cars.
These crises are not private. While straining to cope with their own pain, people are learning that they are part of a confusing debate in society over medical issues ranging from physician-assisted suicide to rationed health care. Along with advocates on both sides of the issue, they are learning technical distinctions between words like nonvoluntary euthanasia and active euthanasia. Technological advances in how we can treat people and keep them alive have added to the confusion surrounding the debate.
The pain and confusion expressed by people in crisis has made it fashionable (and compassionate according to some) to talk about a simple yet deadly solution: 'Give it up. It's not worth the pain.'
Read More Show Less

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  • Posted January 16, 2013

     Has your family ever wrestled with a life and death crisis?  Ha

     Has your family ever wrestled with a life and death crisis?  Have you ever been forced to wonder:


    "Are we prolonging Grandpa's life, or just causing him pain, or should we 'let him go?'"
    "The doctors say she has no chance of coming out of this coma. She is only a child! Do we keep her alive any longer?"
    "He says he refuses to be a burden on us, he feels like he would be taking something away from someone who needs it more. He says he will kill himself first."

    These plain, flat words do not carry the distress of such a time, not at all.  On the inside of the crisis we might feel no one understands our private pian, on the outside looking in we might feel that these are all private crises, with private choices to be made.
    Joni reminds us "These crises are not private. While straining to cope with their own pain, people are learning that they are part of a confusing debate in society over medical issues ranging from physician-assisted suicide to rationed health care...The pain and confusion expressed by people in crisis has made it fashionable to (and compassionate according to some) to talk about a simple yet deadly solution: Give it up. It's not worth the pain." 

    I have felt since I first met her books that Joni was the woman to talk about life, death and suicide/euthanasia. 
    She knew the desperation of daily pain- let her tell you about it! "I had absolutely no idea of how I could find purpose in just existing day after day- waking, eating, watching tv, sleeping. Why on earth should a person be forced to live out such a dreary existence? How I prayed for some accident or miracle to kill me. The mental and spiritual anguish was as unbearable as the physical torture."
     What if it is not a loved one you are watching- what if it is you? How do you answer these questions- of meaning, of the value of life, or personhood. How do you refute the lie that function determines value in a society where human life is increasingly cheapened?
    "The questions seem impossible. How could there be any answers? How am I supposed to know what to do? You don't."   Where shall we go for true answers to these questions?  Joni continues, "But God does...I am convinced of this logic because of what God has promised. In Christ, He says, "Are hidden all treasures of wisdom and knowledge." 
    It is very easy to plead ignorance when faced with an impersonal voting ballot on which we are asked yea or nay to euthanasia and assisted suicide, and say "It's none of my business- they want to die it is their right-it does not affect me!"
    But we are deceived if we think so. Their death by assisted suicide/euthanasia will affect us. As Joni points out- the logical end of euthanasia is sheer terror, and what we write into law now will affect the next generation of disabled people who will be pressured into taking the "safe and legal" option we gave them.  This is part of the fundamental truth of euthanasia- it is sold to us as the right to die- and all too soon becomes the duty to die for the good of society. Die- you are taking up a bed. Die, you are using up rationed health care. Die, you no longer serve the state.
     Whether you are the child of an elderly father who is afraid he is "taking up room", or a desperate young person who says "It is my choice-" it isn't yours alone.
    Your choice matters to others- even people you don't think care would be devastated. There is somebody who cares.
    Your Choice Matters to God. The One who gave your your Life and sustains it.
     Your choice matters to the enemy. The whisper in your ear to take your life? That comes form the one who wishes you would be murdered. Your enemy has been a murderer from the beginning.
        Joni explains these points in her logical, compassionate way, explaining the stories of people who chose to die and those who fought to live. I recommend this book for anyone interested in a response to assisted suicide/euthanasia. Joni has filled her book with her own testimony, stories from friends and family, and scholarly research about euthanasia and suicide.
     I was blessed to receive The Life and Death Dilemma for a review from Zondervan. 

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