Compassionate, informed advice about healthcare decision making

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COVID-19, a Face Mask, and My Thomas Merton Moment

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I surprised even myself with this “Thomas Merton moment.” Where did THAT come from?

Early April 2020. Coronavirus, coronavirus… all day, every day. The first time I wore a face mask on my daily trip to the post office. It seemed like the right thing to do. To help prevent ME from unknowingly spreading the contagion, I can wear a mask. So, I did.

All of a sudden — as I stepped out of the car — I had a great sense of connection to everyone I encountered. It bordered on compassion. Definitely caring.

I thought, “Old lady slowly moving toward the door, I’m doing this for you.” “Office worker pulling mail out of your P.O. box while I wait to get to mine, I’m doing this for you.” “Postal worker now behind plastic, I’m doing this for you.” “And you two who are six feet from me in front and behind in line, I’m doing this for you.”

No words were spoken. And the ones I saw with masks, I secretly thanked them. “Thank you for caring about me.”

My first mask-wearing venture into the United States Post Office in Oxford, Mississippi, immediately brought to mind an experience of the Christian mystic Thomas Merton on the street in downtown Louisville, Kentucky. The monk found himself away from the monastery and in the midst of crowded sidewalk.

“In Louisville, at the corner of Fourth and Walnut, in the center of the shopping district, I was suddenly overwhelmed with the realization that I loved all these people, that they were mine and I theirs, that we could not be alien to one another even though we were total strangers. It was like waking from a dream of separateness, of spurious self-isolation in a special world.… This sense of liberation from an illusory difference was such a relief and such a joy to me that I almost laughed out loud.… I have the immense joy of being man, a member of a race in which God Himself became incarnate.” (Conjectures of a Guilty Bystander, 1966).

Some people believe wearing a mask shows weakness. I believe it is a way to show others I care. Even Jesus told us, “If you do this to the least of these, you do it to me.”

I don’t think I was as generous as Merton who said he “loved all these people.” But I did genuinely have a sense of connection and caring for each one. In these uncertain times, more caring and connection can’t be a bad thing. Can it?

She, More Than Any Other

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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 O’Connor, 1971, from jacket of Eighth Day of Creation

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.

She had been sick before. I remember she and her friends telling me the story of the writing of one of her first books either, Call to Commitment or Journey Inward, Journey Outward. They said she was crippled with arthritis and could not even walk. Yet, she, and they were determined to finish the book. Her friends would come over in the morning, lift her out of bed and sit her down in front of the typewriter. She would write. By the way, I recall her talking once about her discipline of writing and she said she would commit herself to being in front of the typewriter several hours each day whether she wrote a single word or not.

Even in healthy times Elizabeth seemed frail. She was thin, perhaps 5’2” in height. She spoke with an almost “mousey” voice. Yet . . . when she spoke . . . . I used to say she had the E.F. Hutton syndrome after the TV commercial. “When Elizabeth speaks, people listen.”

I was attending a youth worker’s convention in Atlanta in the Fall of 1975. While there I attended a workshop on “Contemplative Prayer.” I knew little about the subject but it was being taught by a fellow Southern Baptist, Bill Clemmons. He often quoted from a book entitled Search for Silence by an Elizabeth O’Connor. I was so intrigued that when I returned to Macon, Georgia I immediately went to the local bookstore to order a copy. It came. I read and was transformed. How so?

The impact of one book on my life

First, the book introduced me to the idea of contemplative prayer or Christian meditation. I knew I wanted this to be part of my life and made a personal commitment (even wrote it in my journal) to live the life of a contemplative. To be in touch with the deep center within my life . . . to know God in my heart of hearts. Though I have wavered in my practice of the disciplines, I have never wavered in my sense that my life must be lived this way. My introduction to “centering prayer” last year has built on the foundation Elizabeth laid down for me 23 years ago.

Secondly, this book started me journaling. The structure of Search for Silence was built around six exercises. The reader was encouraged to write in a journal responding to Elizabeth’s questions. I did and was profoundly moved by the experience of pouring my life onto the pages of a simple composition book. Again, though my discipline has wavered at times, journaling continues to be one of my most cherished of the spiritual disciplines. Elizabeth said, “You will never learn from your life unless you reflect on it.” I do this reflecting in my journal more that any other place.

Lastly, this book introduced me to Church of the Saviour. I had heard little bits about CofS during my seminary days but not enough to pique my interest. In about the middle of the book, Elizabeth takes a break from the exercises and writes on the topic of “Prayer and a Coffee House.” It is the story of the Potter’s House and how church members spent time in prayer to seek the moving of the spirit as they were going to open the doors of the coffee house and doors of their hearts to any stranger who would like to enter. I was fascinated by a church that took call so seriously and sought to be a presence of God in Washington, DC.

I rushed back to the book store and ordered anything and everything Elizabeth had written. I was further drawn by the vision and call of Gordon and Mary Cosby and other founders of CofS. I knew I must go and see for myself. In April, 1976, with my wife pregnant, we flew to DC and spent four days in an orientation to the church at Wellspring, in the Maryland suburbs. We were introduced to silence in community; to inner city ministries; to the Potter’s House; to Gordon and Elizabeth. The next Monday morning I met with the pastor of the church where I was youth minister and told him, “I don’t know what I am going to do with this, but I know I can never do church the same after what I experienced in four days in DC.”

The call to Washington, DC

What we did in August 1978 was pack all our earthly belongings in a Ryder truck and head north. We had no jobs nor prospects of one and we had two children age two and four. The sense of call was so great we had no fear. It all started with Search for Silence.

At CofS we joined the faith community where Elizabeth was a member. I also joined a therapy group she led. For four years or so I met weekly with other group members who were there to work on the rough edges of our lives. There were many E.F.Hutton moments. Someone asked her once how one gets out of a therapy group . . . how do you know when your are done? She said, “When you neither look up to nor down to anyone in the group and you can adequately express your feelings.” I am still working on those.

Her impact on Hard Choices for Loving People

I have a funny story that involves Elizabeth and her pushing me to speak up and be more clear. When I finished the first draft of my book Hard Choices for Loving People in 1989 I sent a copy to her and also one to a physician I knew from the church. In the book I wanted to present both sides of end-of-life medical treatment decisions so the reader could make up his/her mind. But I had my own idea about how they should decide. When the physician sent me his opinion he said, “Hank, it is so obvious how you want people to decide. You really should not be so manipulative.” And Elizabeth, always pushing me, said, “Hank, I can’t quite tell where YOU stand on these issues. You need to be more clear.” Because I got those two opposing views I added a final chapter where I was very up front and clearly stated where I was on these decisions. I was able to pull out my attempts at manipulation from the main body of text and make it a kinder, gentler piece. I think that move has contributed to books popularity.

What if I had never read Search for Silence?

Inscription on my copy of the 1987 Cry Pain, Cry Hope

The move to Washington was a watershed experience for me. I learned I could pull up stakes at what I sensed as the call of God and be richly blessed. I was introduced to the ideas of peace and justice in my first mission group, World Peacemakers. I got my first job in health care through a contact made at CofS. I got a very healthy view of therapy and benefited greatly from the process. I got my first spiritual director and learned to be a spiritual director.

What if I had not attended that workshop in Atlanta or bought Search for Silence? Would we have died on the vine in Macon? Would I have accepted the limited vision of most churches today had I not seen with my own eyes what church could REALLY be like? Would I ever have picked up a journal? Would I have ever gone to Haiti as I did with a CofS group three years ago?

All moot points.

I did attend the workshop, was introduced to Elizabeth O’Connor and the rest is history. Nothing can take away the richness she so willingly gave to me. She more than any other writer has had a profound effect on my life. I can’t imagine any other book ever taking over the number one place of Search for Silence. Thanks Elizabeth.

Preparing for Death as a Game . . . really

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As I have wandered around the internet looking at things death and dying, I ran across a very intriguing project. The company, “Common Practice,” has developed a game called “Hello” to help people have discussions about death and dying.

The concept of the game is quite simple. Gather people together to talk about what is most important in life as you think about dying. Their website offers videos and testimonials that give you an idea of how it works.

This looks like it has real possibilities for staring conversations in families and among friends. In my view, the family discussion about end-of-life care is the most important part of preparing for healthcare decisions in the face of a life-threatening illness. The family conversation ranks right up there with assigning a healthcare proxy.

This game could be part of the process.

Thanks guys!

Hank

Forcing My Will on Patients

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Doesn’t a healthcare professional know what is best for a patient making medical decisions? Seems like a simple question and answer. They are the professional with much more experience and knowledge, of course they know what the best decision should be.

Maybe not.

David Hilfiker warned me against forcing my will on patients. I wrote about Dr. Hilfiker and his Alzheimer’s diagnosis in my last blog. It was he who helped me make a huge improvement in my book Hard Choices for Loving People. In the first edition of my book (1990) I discuss CPR and feeding tubes and offer help to those making decisions about these treatments.

Sometime in 1988 or ’89 I sent an early draft of Hard Choices to a dozen or so professionals for comment. Two people made the exact opposite observation about my writing.

“Hank, you are much too forceful”

Dr. Hilfiker wrote something like, “Hank, you are much too forceful in telling people what they should do with these medical decisions. You have disguised it as a discussion but it is obvious the conclusion you want people to make.”

I had spent several years in a therapy group led by Elizabeth O’Connor. Besides her life as a therapist she was a very successful author. One of my “issues” then was not being clear about what I want and what I am feeling in my heart-of-hearts. Respecting her written work and her sensitivity as a therapist, I sent her a draft of Hard Choices. Her comment was, “Hank, I can’t tell where you stand on these issues. What do YOU recommend?”

Truth is…they were both right.

For example, I felt so strongly that CPR offered no benefit to frail, dying, very old, nursing home residents that I wanted to guide my readers to choose a “No CPR” order. But I tried to get them to see my viewpoint through manipulation and condescension. After all, I had spent years working with these types of patients and was well-versed in the medical literature surrounding the topic.

David could see this very clearly with his years of clinical practice where he also had to advise patients and families on making end-of-life decisions. I had pretended like I was leaving it up to the decision-makers but I had worded it is such a way so they would only do “what I wanted.”

Elizabeth was confused because I did not clearly state what I believed. Not being a medical person, she could not see my hidden agenda.

I am forever grateful for their opposite assessments of my draft. What I did was state very clearly my opinions about specific medical treatments. But I put them in a section in the back of the book, plainly marked as my opinions. AND I softened the language earlier in the book where I have truly attempted to give the facts and let the readers draw their own conclusions.

The book … let’s them make up their own mind

Just yesterday, someone called the office looking to buy more copies of Hard Choices. Her hospice has purchased thousands over the years and they needed more. She said, “The thing I love about the book is the author gives people the information and let’s them make up their own mind.” I can’t tell you the number of times people have complimented my book saying how open, balanced, and nonjudgmental it is. It wasn’t that way originally.

This is a challenge for the healthcare professional. How do you present the facts of a case to a patient or family without forcing your will on them to make the decision you think is the correct one?

A family may feel guilty

Sometimes, physicians may not say enough to help these decision-makers. I am afraid some doctors bend over backwards respecting patient autonomy and trying not being too forceful in discussions that they are not truly helpful. They may say, “You can attempt to save her life and try CPR on your 95-year-old mother with cancer or not. It is up to you.”

So a family may feel guilty for not attempting a life-saving treatment. In this case, the physician can tell them clearly that CPR rarely works and often patients and families refuse it. Lay people need the best medical information as they face end-of-life decisions. Not being forced to make a decision but gently told the facts, options, and the pros and cons of different choices.

There is a balance somewhere in the middle of offering no advice and being willful. People say I hit it.

Thanks David and Elizabeth. You helped save me from myself.

Hank

22 Years, 3 Million Books

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A couple of weeks ago I passed the three million mark for books sold. Mostly it was the Hard Choices book but also 80,000 or so Light in the Shadows. Who could have predicted?

In 1990 I had been a nursing home chaplain for seven years when the Fairfax Nursing Center published the first edition. We printed 1,000 books. I told my administrator I thought we could sell enough to pay for the printing. We sent copies of Hard Choices to 100 other nursing homes in Virginia and sold 4,000 books. It was a simple 36-page booklet to help patients and families with end-of-life decisions.

Lucky timing on my part

In 1991 a federal law, The Patient Self-Determination Act, kicked in, which required all hospitals, nursing homes and hospice programs to inform patients or their families of the right to an advance directive and a right to refuse treatment. Hard Choices did just that. Lucky timing on my part. We sold over 50,000 copies in 1991 as facilities were scrambling to comply with the law.

(more…)

“You Can’t Make a Wrong Decision”

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“I made a mistake. Made the wrong decision,” the wife of the recently deceased man said.

Last Friday I was speaking at the Centra Hospital in Lynchburg, Virginia. In the room were fifty or so clergy types along with physicians, nurses, social workers and just plain folks. I divided my presentation with the first half devoted to helping patients and families make end-of-life decisions. Later I turned to the emotional and spiritual issues at the end of life.

A lady raised her hand and told this story. She has a friend whose husband had been in a nursing home and on a feeding tube. He was not considered to have the capacity to make his own medical decisions so all the medical treatment decisions rested on his wife. On more than one occasion the patient pulled out the feeding tube.

This friend suggested to the wife that perhaps the patient was saying he did not want the feeding tube. The wife always responded, “He doesn’t know what he is doing.” The tube was always reinserted and the feedings were resumed.

“I should have left the tube out and let him die sooner.”

About six months after the patient died the friend was visiting with the wife. The wife said, “I made a mistake. Made a wrong decision. I should have left the tube out and let him die sooner.”

At times, I have heard other family caregivers express similar regrets about decisions that were made. “We shouldn’t have sent mom back to the I.C.U.” “I wish we had never started the feeding tube.” “We kept the chemo going way too long.”

You can never make the wrong decision

When I hear remorse like this I always tell people, “You can never make the wrong decision. You make the best decision you can with the information you have at the time.” I have never, in my 28 years of being close to decision-makers, thought someone made a decision with the intention of harming a patient. People always want the best for the patient. It is only in looking back that they say a decision was a mistake.

I even say “you can’t make a wrong decision” to people who are in the throes of a decision-making process. I hope to ease the burden they are placing on themselves. These choices can be hard enough. I want to assure these burdened families they can’t make a wrong decision. You just do the best you can with the information you have at the time.

 

Photo by Nik Shuliahin on Unsplash

A Metaphor for End-of-life decisions

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How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years. I have written endlessly on the subject. I have lectured up to eight hours in a single day on topic.

One thing for certain . . . the fact that patients and families often struggle with decisions about medical treatment at the end of life will not go away.

A story became a metaphor.

“I’ve got to make a life-and-death-decision about my mother by Thursday,” the teary-eyed woman said to me on a Monday morning. She volunteered once a week at the nursing home where I was chaplain. She wanted me to help her.

We found a place of quiet. “Tell me what is going on?”

“My mother is in a hospital in Virginia Beach and is on dialysis. My brothers and sisters and I have to decide whether or not to withdraw the treatment and let or die.”

“Has you mother been sick for a while or did she all of a sudden go into kidney failure?”

“Oh, her health has been going down for some time. She has had two strokes in the last two years and now her kidneys are shutting down.”

“What do the docs say? Is the treatment doing any good?”

“They don’t think it is doing any good at all.”

“Did you mother ever give any indication what she would have wanted in a situation like this?”

“Mom said she never wanted to be on dialysis.”

I am thinking, “What’s wrong with this picture here?” In my mind, the obvious choice was to remove the patient from dialysis. I told the woman as much.

I said, “This is not a hard decision. Of course, you take your mom off dialysis for all the reasons you just gave me. This is the end of a long decline in her health. The docs say the treatment is not doing any good. And your mother said she never wanted to be on dialysis. Of course you take her off.”

I wanted to know more. “What is going on here that makes this decision so difficult?”

At that point she began to cry, “I think I am feeling guilty because I haven’t visited mom enough.”

When she said “guilty” I knew she was moving into my area.  . . . I’m a Baptist. I know we think we have more guilt than other persuasions. Of course, there are the famous Catholic and Jewish forms of guilt. Fair or not, religions often encourage guilt feelings. Although she did not say her religious beliefs led her to feel guilty, I felt more at home as a chaplain in the face of such deep emotion.

The metaphor the story became is this: For patients and families end-of-life decisions have little to do with medicine, ethics, law, religion, or morality. For them these decisions are primarily emotional and spiritual in their nature.

It is not that medicine, ethics, law, religion, and morality have no part in medical treatment decisions. They are a huge part, especially at the end of life. As we enter our final days or months often the resolving of these issues points toward withholding or withdrawing certain treatments. Then the big question for the patient or family is “can I let go?”

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