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What Dying People Want: Practical Wisdom For The End Of Life Paperback – July 8, 2003
"Neverworld Wake" by Marisha Pessl
Read the absorbing new psychological suspense thriller from acclaimed New York Times bestselling author Marisha Pessl. Learn more
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"[A]n all-encompassing guide for people with a terminal illness and those who know someone who is dying." -- New York Times
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It is down-to-earth and very easy to understand, with many examples from the author's fifteen years in palliative care.
In particular, what impressed me was Chapter Four, "Being Touched, Being in Touch." Touch may be equal with pain relief for the total comfort of the dying patient. We do pretty well with pain and not so well with touch. Many patients are never touched in love or just kindness. Nurses and doctors touch in doing necessary clinical care. Even loved ones may just kiss the patient on the forehead when they leave. No one ever just sits and holds the patient's hand.
Kuhl gives plenty of evidence for the importance of touch. For example, a study of premature babies in pediatric ICU's found that those who were taken out of the incubator daily and had their stomachs gently stroked had a fifty percent higher survival rate than babies who were not touched.
Our need for touch never leaves us, but for various reasons this is forgotten in the dying process, where it may be most important. Holding hands, head rubs (my favorite), tummy rubs, stroking an arm or leg, there are many ways to touch in a safe manner that won't be misunderstood. If you're a man with a male who's dying and you feel uncomfortable about holding a man's hand, hold his wrist. It's not so important what part of the skin it is, just that someone is touching with love and care.
While the book is addressed to a lay audience, professionals need to be reminded of this as they hurry through their overloaded day. Just two or three minutes of holding a hand, speaking soft and with care, even to the comatose, may be very important.
Please, anyone who reads this, touch a loved one today. And remember this when you visit a dying friend of loved one.
When I was diagnosed with congestive heart failure, I was somewhat more stunned than I had expected to be. I knew how many people in my mother's family had died from it, and only two months earlier I had asked my internist if she thought I was heading into heart failure. I knew I had several of the symptoms, and was concerned. She assured me that I did not have congestive heart failure, but I had an upcoming visit with my pulmonologist. When he referred me me to a cardiologist, the cardiologist did tests that were more specific than those the pulmonologist did, and told me that I was in the very early stages of diastolic heart failure. A look through the internet when I got home told me that diastolic heart failure eventually leads to overall congestive heart failure, which is fatal unless the patient dies of something else first. Only 50 % of those diagnosed with congestive heart failure, no matter how early it is caught, are alive ten years later. I spent the first week in shock, crying off and on, not because I am afraid of dying--I am not--but because I knew how my family would grieve, and I especially didn't want to die in front of the grandchildren.
I went to Kindle to see if I could find good books on dying, and latched onto this one. I found it agreed with my philosophy--do not lie to the patient, do not make the patient lie to you, let the patient die in dignity. I had written an impassioned conversation in my only (so far) fantasy novel, between two young men, one of whom saw his grandfather dying while being forced by those around him to pretend he thought he would recover. I wanted to know what I could reasonably expect from my loved ones, and how to bring it to their attention.
My internist kept pointing out to me that at present I am at a very early stage, and probably have ten to fifteen years left in front of me. But I remembered my grandfather, dying suddenly while trimming the hedge, when I was five years old, and I am twenty years older than he was. I knew the ailment was diagnosed early on, because I had a complete cardiology workup a year and a half earlier before major surgery and there was no sign of it then. But that said nothing about my prognosis, and neither did the fact that my son, twenty-five years younger than I am, had already had four heart attacks and three stents.
I reread WHAT DYING PEOPLE WANT several times, finding more encouragement and comfort in it each time I read it, and now I am feeling better emotionally, and I have no problem now excusing myself so that I can go put on my oxygen hose.
This book is a comfort to the dying and to the soon-to-be bereaved. I appreciate the hard work the author put into it, and the many people who cooperated with him as he did his research. I have also read Elisabeth Kubler-Ross, and find her work helpful, but unlike some of Dr. Kuhl's readers, I find his work more useful than hers. I recommend this book very highly.
This book tells the stories of many people who go through the process of dying. It is fine preparation for death, whether you are terminal or not. Actually, we are all terminal; but some of us have been told that our expiration date is coming up soon, and therefore have the advantage of knowing the importance of preparation. And, the book is an excellent guide for being with those who are dying.