Old and Sick in America: The Journey through the Health Care System

By Muriel R. Gillick | Go to book overview

CHAPTER ELEVEN
Movers and Shapers

One of the most agonizing decisions families make for their relatives with advanced dementia in the nursing home is whether to insert a feeding tube. “Mom no longer knows how to chew and swallow her food,” I tell them, or “Dad pushes the nursing assistant away when she tries to spoon-feed him.” But no matter how gently I try to suggest that refusing food or losing the capacity to eat are normal parts of the dementing process, families worry that the person they love will “starve to death,” and unless they authorize surgical placement of a percutaneous endoscopic gastrostomy (PEG) tube, they will be complicit in that death.1

I explain that dying involves a shutting down of various basic bodily functions and that dementia, in its final stage, is no different from advanced cancer. But accepting the notion that someone they care about and for whom they feel responsible will dwindle away is often too much to bear. There seems, after all, to be a technological fix. We can try to counteract nature: we don’t have to sit by and watch the end come. I suggest that simple acts of caring such as wiping the lips to keep them moist, offering an ice chip, and holding hands are far more meaningful than calories in this situation, but family members have trouble believing me. The nurturing instinct is very powerful. And won’t Mom experience hunger pangs? Won’t she suffer?

What helps this conversation along is the work done by geriatrician Dr. Susan Mitchell, who performed a study that provides compelling if not conclusive evidence that feeding tubes do not prolong life in patients with advanced dementia. When she compared nursing home residents in the state of Washington who had a PEG inserted to a group of nursing home residents who did not, despite a comparable degree and duration of cognitive impairment and after adjusting the data for other concurrent conditions, she found that survival in the two groups was identical. Many were dead within six months, most within one year.2 Families struggling with whether to use a PEG can rest assured that declining artificial nutrition doesn’t make them murderers. But does it make them torturers?

That concern is harder to allay. We do have dramatic evidence from alert people dying of advanced cancer that they don’t feel much in the way of hunger or thirst when they can no longer take nutrition by mouth. Some report transient thirst or hunger, easily alleviated by ice chips. I also point out that

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Old and Sick in America: The Journey through the Health Care System
Table of contents

Table of contents

  • Title Page iii
  • Contents vii
  • Prelude ix
  • Abbreviations in the Text xxi
  • Part I - The Office 1
  • Chapter One - Going to the Doctor 3
  • Chapter Two - The Lay of the Land 23
  • Chapter Three - From the outside in 41
  • Chapter Four - The March of Time, 1965–2015 61
  • Part II - The Hospital 79
  • Chapter Five - Entering the Palace of Technology 81
  • Chapter Six - The Varieties of Hospital Experience 97
  • Chapter Seven - The Hospital through Other Eyes 113
  • Chapter Eight - The Transformation of the American Hospital, 1965–2015 133
  • Part III - The Skilled Nursing Facility 151
  • Chapter Nine - Going to Rehab 153
  • Chapter Ten - Different Snfs, Different Miffs 169
  • Chapter Eleven - Movers and Shapers 184
  • Chapter Twelve - Now and Then 202
  • Finale 223
  • Acknowledgments 245
  • Notes 247
  • Bibliography 267
  • Index 293
  • Studies in Social Medicine 301
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