“I wanted to thank you for sharing your experiences and wisdom in your books, ‘Hard Choices’ and ‘Light in the Shadows.’ I ordered two copies of ‘Hard Choices’ one to give to my mother’s doctor and one for my family to keep and share. It is an exceptionally informative book. My husband is reading it now and it will be a discussion point for our planning for our end of life wants and needs.”

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You Can’t Get What You Want

I changed my mind. Since 1990 I had a question to help people make decisions about end-of-life medical treatments. 3.6 million copies and six editions of my Hard Choices for Loving People book have included this question I am now changing. One essay in a medical journal convinced me in an instant. I read it and it rang true. Dr. Margaret L Schwarze, et. al. wrote “You Can’t Get What You Want: Innovation for End-of-Life Communication in the Intensive Care Unit.” I just recently found this piece from January 2016. (American Journal of Respiratory and Critical Care Medicine, Volume 193, Number 1, January 1 2016) Asking The Wrong Question The question I am changing is used so much by doctors, nurses, chaplains and social workers it is almost reflexive. Say you have a demented 85-year-old patient in a nursing home and the family is having to decide about CPR. After explaining the options and prognosis the doctor may then ask, “What would your mother want?” We in healthcare ask this all the time. We have been well-meaning all these years. We are trying to get the opinion of a patient who can no longer give an opinion. We are being […]

Feeding Tubes: Guantanamo NO; Our Parents OK

Here is a great piece that was in the New York Times yesterday. It powerfully tells the truth that feeding tubes for advanced dementia patients cause more pain with no benefit. http://www.nytimes.com/2015/11/24/opinion/force-feeding-cruel-at-guantanamo-but-ok-for-our-parents.html?smprod=nytcore-iphone&smid=nytcore-iphone-share

Is the Advanced Alzheimer’s Patient No Longer a Person?

Good question. As people lose their memories, can no longer say who they are, can no longer recognize those closest to them … what’s left? Blame it on the French. Well…actually, one Frenchman, René Descartes (1596-1650). He wanted to know, “What can I really know for sure?” His conclusion was, “I am thinking.” He then gave us, “I think, therefore I am.” Fast forward to our effort to understand what is going on in the minds of dementia patients. These people are losing the ability to think. Eventually, they cannot recall the stories that made them who they became as adults. They cannot recall what they had for breakfast. They cannot tell you who they are. So if Descartes is right, who are we when we can no longer think? Could we say, “If I don’t think, therefore, I am not”? “Consider the phrases used [in the vast medical literature] to describe Alzheimer’s impact: ‘a steady erosion of selfhood,’ ‘unbecoming’ a self, ‘drifting towards the threshold of unbeing,’ and even ‘the complete loss of self.’” I got that sentence from a new book by Anil Ananthaswamy, The Man Who Wasn’t There: Investigations into the Strange New Science of the Self. […]

Is Alzheimer’s a Terminal Disease?

I say yes. I have sold over 3 million copies of my book Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Disease. Only once, in the 25 years since the First Edition came out, I received a complaint from a reader who took issue with my claim that Alzheimer’s Disease is a terminal disease. They told me, “You don’t die from Alzheimer’s. You die from something else like pneumonia, or a stroke, or cancer.” But I say, in most cases, the advanced dementia leads to what finally takes the patient. For example, pneumonia is a very common cause of death for these people. The end stage of Alzheimer’s is marked by increased eating difficulties and increased frequency of fevers. Getting food or fluid in the lungs can lead to pneumonia that can lead to death. 50% of advanced dementia patients who are hospitalized for pneumonia or a fractured hip are dead within six months. There is even a recognizable “end stage” of this disease. Persons in the last phase of Alzheimer’s qualify for hospice benefits under Medicare. Families and physicians often modify the goals of medicine for advanced dementia patients. It is […]

Slow Down, You Are Doing Too Much

“Let her go in peace,” was my bottom-line message. ER trips, IV antibiotics, bulb syringes … all had become extraordinary measures … in my view. A woman called me out of the blue yesterday. A hospice worker had given her my Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness. I am not exactly sure what she wanted from me as she talked rapidly and pretty much constantly through our close to an hour on the phone. This never-married woman was the primary caregiver for her 96-year-old mother. The old lady had suffered strokes and dementia was advancing. Because of the swallowing difficulty the daughter was forcing food into her mother’s mouth with a bulb syringe. This is a rubber device, shaped like a tear drop. You suck food into the bulb then stick the narrow end into the patient’s mouth and force the contents out. It sounds like the medical professionals in both hospice and the hospital have encouraged the daughter to slow down. But she has sent her mom to the ER three times over the last several weeks. “Maybe if they just give her some IV hydration she would […]

We Didn’t Want to Put Him Through That Again

I just got off the phone with the widow of an old friend of mine. She called to let me know her husband died last week. I hadn’t heard. He was 70. Alzheimer’s. I last saw him in October on my way to a speaking engagement near Orlando. This was the week before he entered a memory care unit. I’m not sure he knew me. He told stories and laughed like he always did but his words made no sense. We had grown up in the same neighborhood and I followed him three years behind to the University of Florida. He played baseball, me football. He went into law, me the ministry. Over the years I would stop by and we would go fishing. He loved to fish the lakes. His wife told me he died from aspiration pneumonia. A very typical way for advanced dementia patients to go. They get food or fluid in their lungs and an infection follows. Often these patients are treated with antibiotics and the pneumonia is cleared up. Then the decline of the patient continues and they get pneumonia again, etc., etc. They refused antibiotics and called hospice. She told me he died the […]

The Country of Sickness

“I have never been anywhere but sick. In a sense, sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there’s no company; where nobody can follow. Sickness before death is a  very appropriate thing and I think those who don’t have it miss one of God’s mercies.” Flannery O’Connor, 1956. The southern and Catholic author was diagnosed with lupus in 1951, the same disease that killed her father when she was a teenager. She died in 1964 having lived and suffered and wrote and thrived with lupus for 13 years.

Books ONLY from My Brother

I do not like people giving me books to read that I have not requested. I have like 100 books on my wish list and when family members ask me what they can give me for a gift I go to the list and send several suggestions. I think of myself as a slow reader with a somewhat narrow range of interests and don’t want people cluttering up my reading pile with books I previously had no interest in. So I drove from Virginia to Florida for Christmas with a stop at my brother’s rural home near Tallahassee. He handed me a gift. You guessed it. A book. A book I had not requested. But he was generous and I do not give my do-not-give-me-a-book speech right after the kindness of a gift. I just finished reading all 241 pages. That comes out to about 4 pages a day since I accepted the book. See…slow. Turns out it has become one of my all time favorite books. Of course it is in the death and dying genre. Right in my narrow range of interest. NOTE to family and friends: Only my brother Dennis can give me books I have not […]

Doctors Choose LESS Treatment When Dying

Here is a great article from 3 years ago about physicians choosing less aggressive treatments as they are dying than does the general public. http://www.wsj.com/articles/SB10001424052970203918304577243321242833962# Hank  

She, More Than Any Other

I just co-led a silent retreat where we pondered the writings of Elizabeth O’Connor. Never heard of her? Not to worry. Here’s a piece I wrote about her in 1998. October 31, 1998, Monterey, CA Last year, after Viktor Frankl died, I thought about the most influential books on my life. I gave Frankl’s Man’s Search for Meaning the Number Two spot on the list. Partly perhaps because I only read it in 1993 and it hasn’t had as much time to “influence” me significantly. But more to the point of the list, I chose a book that has “caused” more change in my life than any other volume. The Number One most influential book on my life is Search for Silence by Elizabeth O’Connor. Elizabeth died last week at age 77. She had been struggling with cancer the last few years and I lost personal contact with her. About a month ago I was talking with one of her close friends and asked if Elizabeth was writing about her experience with a life-threatening illness. She said, “No. She doesn’t do much of anything. I wish she would.” Apparently she was a very sick woman. Too ill to even write. […]