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Hard Choices for Loving People, 2nd Edition: The Story Becomes Front and Center

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This is the second post in a series of articles about the writing and distribution of Hard Choices for Loving People. This piece covers the Second (or Revised) Edition.

This Revised Edition came just 19 months after the First. Below are the first lines of the 1992 edition of Hard Choices for Loving People. This story is repeated as the opening words in each of the editions to follow including the current edition (Sixth, 2016):

“On the occasion of her 102nd birthday, I went into Mable’s room at the nursing home to ask her about the secret to a long life. I expected some niceties like ‘clean living’ or ‘just trust God,’ since she was a minister’s wife. But she was too wise for that. ‘Mable, how do you live to be 102?’ Without hesitation she responded, ‘Just keep breathing!’

“I wish it were so simple. If we want to stay alive, we ‘just keep breathing.’ Or when there is no hope of recovery from an illness, we could ‘just stop breathing.’ Real life is not so simple for elderly in hospitals or nursing homes.”

I love this story.  I often tell Mable’s story at the beginning of a lecture. She always gets a good laugh.

From the very beginning, I told personal stories about my encounters with patients and their families. Opening with Mable’s story brought storytelling front and center. Stories became a powerful part of Hard Choices for Loving People.  Readers connected with the real people and events. I can’t tell you the number of times people came up to me after a lecture and said, “Your stories really got to me.”

Why a NEW edition of the booklet less than two years from when it first appeared? Two reasons…

First, Nancy Cruzan and her case continued to make news. I mentioned her in my last blog. Talk about a moving story. She was a young woman in a vegetative state in Missouri and her family requested that the artificial feeding be stopped so she could die peacefully. The U.S. Supreme Court said the state could require “clear and convincing evidence” that Ms. Cruzan would have wanted this withdrawal of treatment. After their request was denied, new witnesses came forward to tell of conversations they had  with Nancy when she said, in effect, “If I am ever nonresponsive, I would not want to live like that.” A new trial judge ruled this was “clear and convincing” and he allowed the removal of the feeding tube. She died on December 26, 1990.

Second, a new edition seemed warranted because of who was buying these books. Surprisingly, even though “Nursing Home Resident” was in the subtitle, hospitals and hospice programs were buying them. Community Hospice Care, based in California, bought 10,000 copies in one purchase. So I changed the words in the subtitle to “Elderly Patient” and revised the text to broaden the application to any frail, elderly person — not just nursing home residents.

Not too much else was changed: The text went from 30 to 32 pages and we hired a graphic designer to update the cover. I repeated the same three questions I introduced in the First Edition. I also repeated the same five paragraphs on the spiritual and emotional concerns at the end of life.

The self-publishing journey begins…

Because of the success of the Second Edition, I started a publishing company.

A & A Publishers, Inc. was born in June 1993, named for my kids, Aaron and Ashley. Ashley, still in high school, became the first employee. Our one-car garage was taken over with pallets of books. UPS came every day. I got a PO Box, a business phone and a fax line. There was no internet and we did not take credit cards. People sent us money and we sent them books.

It had all started out of a desire to help the two hundred residents and their families at one nursing home. It was gratifying to know that my stories were now helping thousands of people have a more peaceful death.

 


Second Edition Statistics:

  • Subtitle: CPR, Artificial Feeding and the Elderly Patient
  • Publication dates: 1992-1994
  • Second Edition books sold: 148,700
  • Total books sold: 242,679
  • Length: 32 pages

 

Key content introduced in the Second Edition:

New research on CPR in nursing homes was added.

Hard Choices for Loving People, 1st Edition: “Don’t Put It in Writing!” — I DID

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This is the first post in a series of articles about the writing and distribution of Hard Choices for Loving People. This piece covers the First Edition.

They told me not to write down the information about how some treatments, like CPR, lack benefit for or may even harm nursing home residents. “They” were The Ethics Committee.

The fact that I was even sitting on a medical ethics committee was curious. I was facing unemployment in the summer of 1983. My wife and I were supporting a family with kids aged seven and nine. I needed a job. A pastor friend of mine, Gordon Cosby, gave my name to the owners of Fairfax Nursing Center in the Virginia suburbs of DC. They were just looking for a part-time chaplain. Anybody would do, really.

My work experience since seminary included five years as a youth minister, one year as a carpenter and four years directing an inner-city ministry to help hard-to-employ people. Nothing indicated I was fit to be a nursing home chaplain. I said I would give it a try.

And I found my calling

The nursing home owners, Robert and Charmaine Bainum, were unusual for wanting to attend to the spiritual needs of the residents, families and the staff. Chaplains were not required by regulation. The Bainums, of course, wanted to make a profit but their philosophy was that people will pay extra for the best quality care. They felt spiritual care was an important piece of the best care. It turned out that I loved the work. I asked if we could make the position full-time after just six months on the job. They said, “Yes.” And I found my calling.

Virginia passed a Natural Death Act in 1983. For the first time residents of the state had a standard “living will” form and a process for making end-of-life decisions for those who did NOT have this piece of paper. We formed an ethics committee and asked the question, “What are we going to do about this new law?” Our answer, “We are going to tell all 200 residents and their families about their right to refuse treatment and their right to an advance directive.”

“Oh…and Hank? We want YOU to tell everybody.”

I took a crash course on CPR and feeding tubes

I had just been given twenty more hours each week. I guess they thought, since I had all this time, I should be the one. But perhaps they intuitively knew that these decisions were, at their core, emotional and spiritual.

So I took a crash course in an effort to understand CPR and feeding tubes and the ethics surrounding them. I read medical journals. Mostly I was taught by the Director of Nursing Beth Kleb, RN; Administrator Pat Smith, RN; and dozens of staff nurses. To start, I reviewed all 200 patient charts and found only about 20 had any sort of record of advance care planning. There were very few living wills and very few “No CPR” orders.

After a couple of years of talking to residents and families I suggested to the ethics committee that I write a booklet about making end-of-life decisions. To a person, they responded, “Don’t put it in writing! We like what you are doing… talking to everyone. Just don’t write it down.”

Okay.

Then, in 1988, I saw a study in the latest issue of the Journal of the American Medical Association (JAMA) about the use of CPR at the V.A. hospital in Houston. Very few patients who received resuscitation attempts survived to be discharged and ZERO patients over age 70 survived. I went to my office and started writing the first draft of what was to become Hard Choices for Loving People.  I thought, “We have GOT to get this word out.”

Easier to get forgiveness than permission

It was the classic case of it being easier to get forgiveness than permission. Now, the ethics committee said of my draft, “This is great! Let’s publish it.”

I delayed.

There was one more piece of information I was waiting for. The case of Nancy Cruzan was making its way to the U.S. Supreme Court. Nancy was a young woman in a vegetative state in a Missouri state hospital being kept alive on a feeding tube. Her family had requested the artificial feedings be stopped knowing that is what she would have wanted. The state fought the family all the way up the court system. On June 25, 1990, the SCOTUS sided with the state saying it could require “clear and convincing evidence” that this withdrawal of treatment is what she would have wanted. They went on to say that IF there were such evidence (like a living will or verbal statements) then it was okay to withdraw artificial feeding and let her die.

I had the final pieces to tell my story. CPR doesn’t work for nursing home residents and if the patient chooses, it is okay to withdraw a feeding tube.

The First Edition of Hard Choices for Loving People (1990) had the subtitle of CPR, Artificial Feeding Tubes and the Nursing Home Resident. I wrote one chapter on CPR, one on feeding tubes and a chapter with practical suggestions like completing an advance directive. After an early draft was criticized for being both too willful in trying to manipulate the reader to do what I wanted AND too vague in stating what I truly thought about these treatments, I added a final chapter offering clarity about my opinion. Being clear about my opinion, I cleaned up the earlier text to encourage readers to make up their own minds about these treatment decisions. I closed with some words about the emotional and spiritual concerns at the end of life.

Lightning struck

My goal was to help the residents of this one nursing home have more peaceful deaths. As an afterthought, I suggested to the administration that we send out sample booklets to 100 nursing homes in Virginia to see if we could sell some. Out of that 100 we sold about 4,000 copies. Then lightning struck.

One direct result of the Cruzan case was that congress passed and the president signed the Patient Self-Determination Act. This law required all facilities that received federal funds (Medicare and Medicaid) had to inform patients of their right to accept or refuse treatment and their right to an advance directive. BINGO. We started renting mailing lists and sent a copy of Hard Choices to every nursing home in the country. 1991 saw sales take off. Facilities needed to fulfill the law and my booklet did just that.

I actually was surprised and quite humbled by the response. Selling the book to others was just an afterthought.


First Edition Statistics:

  • Subtitle: CPR, Artificial Feeding Tubes and the Nursing Home Resident
  • Publication dates: 1990-1992
  • Total books sold: 93,979
  • Length: 30 pages

 

Key content introduced in the First Edition:

Three questions to help with end-of-life decisions

  1. What does the resident want?
  2. What is in the best interest of the resident?
  3. What is the prognosis if a certain treatment plan is followed?

Is This the Apocalypse?

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[My friend, James Lamkin, is a former hospital chaplain and now pastor of the Northside Drive Baptist Church in Atlanta. I liked these words so much I asked him for permission to reprint them here.]

Is This the Apocalypse? A Pastoral Perspective

By James Lamkin. April 30, 2020

 Apocalypse is a rare word.  It bides its time and sits quietly on vocabulary’s back pew.  However, when tornados destroy, pandemics overwhelm, and when breaking news leaves us broken…apocalypse is a word we reach for.

With Covid-19 spreading, we’ve wondered: Is this The Apocalypse?

But, not so fast.  Take a deep breath.  Reach for a Bible dictionary (it’s the antique book beside your rotary phone). Look it up—right after Antichrist, just before Armageddon. You’ll notice that apocalypse doesn’t mean devastation or damnation.  It means revealing. Unveiling. Ken Sehested reminds of what the poet, Adrienne Maree Brown, said: “Things are not getting worse. They are getting uncovered.  We must hold each other tight and continue to pull back the veil.”

Oddly, an apocalypse may be Hope’s first step.  Like, “Now that we know the truth, let us begin again with new hope.”

Hope is in short supply. Loved ones have died.  Fragile family finances have tipped.  Rock stable businesses six weeks ago, now feel like shifting sand.  Even if fear isn’t coiled like a snake in the board room, anxiety is never far away.

However, if this is an apocalypse, let’s not waste it. Let’s ask, “What is being revealed to you?”  Make a list of those things. Here are some of mine.

First, everything is more connected than I realized.  Physicists already knew this.  “Pinch a particle over there, and another will say, ‘Ouch,’ over here!”  The cosmos is not something we are in; it is something that we are part of.  Economy is connected to ecology, and the food chain has weak links.

I knew that.  But I know it more now.  MLK was right, “We are bound in a single garment of destiny.”  How we treat folk on the far side of the globe has a butterfly effect that flaps all the way to Buford Highway.

Second, “essential” is different than what I thought.  Maybe I’m deaf, but I’m not hearing a cry for, “More Preachers!”  Rather, “We need the Publix check-out clerk to show-up for work, and the shelf-stocker at Kroger.”  Thank God they have done so…every day.  Essential folk help piece our small lives together.

Third, we are more vulnerable than I knew.  We can’t buy our way out of a global pandemic. The human immune system is good, but humans are late comers to creation’s story. Viruses aren’t smart, but they are adaptive.

Fourth,  what if Mother Nature is making us stand in “time out?”  With her long finger, she points and snarls, “You will stand in that corner by yourself until you learn to behave.”  That might be a long time.

We just ran over the 50-year-old speed bump of Earth Day.  We’ve made strides since 1970; but, we’ve also backslidden.  Ask the Amazon rainforest, aka the lungs of Planet Earth.  Ask the rivers, aka the arteries of this small blue marble.  Remarkable, isn’t it, that since humanity sheltered in place, Mt. Everest “peeked” into view for the first time in decades?  An ozone hole has healed.

Fifth, if human hubris partially got us into this; then humility might be required to get us out.  What did Rabbi Abraham Heshel say? “When I was young, I admired clever people.  Now that I am old, I admire kind people.”  If humanity and the Earth were in therapy, what would the therapist say? “Sounds like dominion isn’t working for you. Try kindness.”

Perhaps we’ll try therapy and kindness this summer…as a church…for God’s sake.  The rearview mirror might reveal “the meaning of this pandemic.”  It may not be the apocalypse; but it can be an apocalypse…but only if we learn from what is revealed.

Photo by Matt Howard on Unsplash

The Death Possibilities

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I am rereading Leo Tolstoy’s A Calendar of Wisdom each morning this year. Here are two of his thoughts from April 6 which struck a chord with me…

Either possibility is good

“When I die, only one of two things can happen: either this essence-which I understand as myself will transform into a different being, or I will stop being a separate individual and become a part of God. Either possibility is good.”

We cannot know this

“Death is the destruction of this body with which I understand the world in this life. It is the destruction of the glass through which I look at the world. And we do not know whether this glass will be replaced by another; or whether the essence which looks through the window will integrate with the world. We cannot know this.”

I’ve Been Dead Before – No Problem

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“Annihilation has no terrors for me, because I have already tried it before I was born—a hundred million years—and I have suffered more in an hour, in this life, than I remember to have suffered in the whole hundred million years put together.” The Autobiography of Mark Twain

No Chewing

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“The more you seek God, the less you will find God. If you do not seek God, you will find God.” Meister Eckhart

I could chew on that one for a long time . . . then again . . . I am sure Meister would say “NO CHEWING! You won’t find God by chewing.”

Opioid Crisis and Terminally Ill Patients

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I am changing my mind…AGAIN!

I wrote last about changing the question “What does the patient want?” Kiss that question good bye.

This time it is on pain control. I am changing “Medications used to control pain DO NOT become addictive to people who have not had addictions problems in the past.” For 16 years you could find this in my book, Hard Choices for Loving People (see page 47).

I came by the statement honestly. Several pain control experts helped me write that sentence. It was backed up by research at the time. I always thought it was curious that people would be concerned about terminally ill becoming addicted. Really? So what if they do … they are dying.

But on top of that, the research at the time said that if you are taking drugs to address pain they do not become addictive. Now the opioid crisis in this country calls that statement into question. People do become addicted. By the thousands.

We are addressing SERIOUSLY ill patients.

I went back to some experts on pain management in hospice and palliative care. In our discussion I was reminded who exactly we are addressing in Hard Choices for Loving People. SERIOUSLY ill patients. These are not the people who take a medication for back pain then become addicted. The patients I am trying to reach in my book are in the last days, weeks, or months of life. My hope is that they will get the help they need to manage all their symptoms including pain.

So here’s the new statement in the book:

“For patients with a serious, life-limiting, or terminal illness, the small risk of addiction is usually of little medical concern. For most of these patients, the benefit of strong pain medication outweighs the risk of addiction. A clinician who specializes in palliative care and pain management can help assess this risk.”

You Can’t Get What You Want

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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.

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 advocates for patient autonomy through the substituted judgement of a family member. The essay authors see several problems with this question.

Several problems with this question

“First, it encourages the family to reflect on treatments, like life support or comfort care, rather than goals.” I am reminded of the doc who cared for my mother. Her dementia had been advancing for years and then she fell and broke her hip. His question to my sister and me was, “How did your mother feel about her dementia?” In many words we told him she hated it and he said, “Okay, here is what we are going to do.” He never asked what treatment plan she would want. He wanted to know how she felt about her underlying condition.

The essay continues with the flaws in the “want” question. “Second, it can shut down discussion; once the family makes a choice, what else is there to say?” The family of the 85-year-old may respond, “Mom loved life. She wants to live. Do everything to keep her alive.” Does she want to live on a machine for weeks or months? Would she want to live not knowing her family? What about the pain and suffering aggressive medical care can inflict? The “want” question cut off this discussion of the patient’s values.

“Third, want is aspirational and evokes fantasies. When we ask patients or their surrogates what they want, we release the constraints of the decision-making context and allow consideration of possibilities outside the boundaries of clinical reality.” A healthcare professional has perhaps seen hundreds of patients like the one where a family is now making a decision about life-prolonging procedures. The docs and nurses know the almost certain disability and/or death awaiting this patient. The family dreams of wanting mom back to how she was before. It’s not happening no matter what is done in most cases.

So, what do we ask if not “what would your mother want?”

Since the first edition of Hard Choices in 1990 I have included “What does the patient want?” as one of five questions to ask as an aid to making end-of-life decisions. Here is what I am changing it to with the next printing:

  1. What does the patient think about their current and probable future condition? A patient with decision-making capacity can speak for themselves. If they are unable to express an opinion then try to imagine how they would think about the state they find themselves in. If the likely outcome of further life-prolonging procedures would lead to increasing disability and/or greater mental decline, what would they say about that? The purpose of this question is to try and imagine what the patient values most.

 

This is a more open and honest discussion of the patient’s values rather than a yes or no about a particular treatment. The family can inform the medical staff about what the patient felt was important. Hopefully, the staff can draw up a treatment plan that affirms those values and is realistic about what further treatment can and cannot accomplish.

In the summer of 1968, as a college student, I did ministry work on the streets of Newark, New Jersey a year after the city had been engulfed in riots. My mentor, Bill Iverson, encouraged us to follow Socrates and ask people questions instead of trying to preach at them. He had a great saying which applies here.

“Ask people the right question and they will give you the right answer.”

POST or POLST . . . Start Talking

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It’s a big problem. Actually, it is several big problems and Louisiana is trying to do something about it.

I will narrow it down to two problems:

1) Conversations between physicians and patients or their care givers about end-of-life care rarely happen or occur so late that they offer little guidance for the final weeks or months of a person’s life.

2) Patients who transfer between hospital, nursing home, assisted living, and home often are not accompanied with any instructions as to what the patient’s wishes might be for his/her care.

Louisiana is one of 16 states that have adopted a POST or POLST form. POST stands for Physician Orders for Scope of Treatment. POLST is Physician Orders for Life-Sustaining Treatment. I mention the Bayou State because I was just down there speaking.

Tchefuncte River

BTW, I was expecting a slower pace of life in the sleepy Southern towns I was visiting — Covington, Madisonville, and Mandeville. They are at the northern end of the 24-mile Lake Ponchartrain Causeway. At the other end is New Orleans. I spent more time stuck in traffic than I do around my home in the Washington, DC suburbs. Evidently, the population in these little towns has mushroomed after 2005 and Katrina. I did find quiet in a park along the Tchefuncte River in Madisonville only to be caught in bumper-to-bumper, stop-and-go traffic for the mile going back into town to the four-way stop.

I digress.

Do yourself a favor

On the program, I followed Dr. Susan Nelson of Baton Rouge. She chairs the LaPOST Coalition and gave an overview of the Louisiana POST. Do yourself a favor and click here to go to the LaPOST Web site. Of the many resources on the site is a section on Religious Faiths and Cultural Heritages. Check it out for diverse views of illness and end-of-life care.

There is also a national Web site promoting POLST/POST at http://www.polst.org.

The common thread running through all the states’ initiatives is an encouragement of conversations among physicians, patients, and/or family members as one’s health declines. All have a standard form in each state that travels with the patient if they are transferred between facilities. The goal is not to limit medical treatments necessarily as one approaches the end of life. The goal is to encourage and make a record of the conversation between a doctor and those making health care decisions. Some may choose to limit life-prolonging procedures and others may want more aggressive care.

The point is to plan ahead and let others know what the goals of care are.

I commend Dr. Nelson and her colleagues for the excellent job they have done in service to the citizens of Louisiana.

Now. . . would you put traffic congestion as an agenda item at your next coalition meeting?

Gordon Cosby and my Call as a Healthcare Chaplain

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Gordon Cosby is the man partly responsible for my 30-year career as a healthcare chaplain. Few outside a certain circle have ever heard about him or the congregation he co-founded with his wife, Mary, the Church of the Saviour (CofS). But there is a rather wide circle of folks who owe much of who we are to Gordon and Mary.

He died this week at 94.

Hundreds let homes, jobs, and traditional churches behind

I left a thriving church youth ministry in Macon, Georgia in 1978 and moved my family to Washington, DC, just so I could be part of what he and Mary started. What they had done drew scores, if not hundreds, to leave homes, jobs, and traditional churches behind. So we sold a home in Macon and put all our worldly belongings in a Ryder truck and moved here with our two kids. I worked as a carpenter for a year then for four years directed one of CofS’s ministries trying to create jobs for hard-to-employ people.

Gordon preceded me at the Southern Baptist Theological Seminary in Louisville by maybe 35 years. He served as an army chaplain with a combat unit in the Second World War. Convinced there was a better way to do church he and Mary started a congregation with just a handful people. The guiding principles were few: integrity of membership, commitment to mission, and commitment to prayer and the inner spiritual life.

Gordon was just that respected

By 1983, the job with the inner-city ministry was coming to an end and I was facing a time of unemployment. Gordon was approached by Charmaine and Robert Bainum, owners of Fairfax Nursing Center (Virginia), asking him if he could suggest someone to serve as chaplain at their nursing home. Robert knew Gordon through their joint concern for Cambodian refuges in Thailand. Gordon suggested me. I interviewed and got the half-time position. I don’t know if they interviewed anyone else.… Gordon was just that respected.

I knew precious little about healthcare. It was on-the-job training. I was ten years out of seminary and out of work. I thought I would give it a try. It turned into being a real call. After six months at half-time I asked if we could make it a full-time position. Turned out I liked it that much. They said yes and I was at the nursing center until 1996 when I moved over to hospice.

My niche found me

Call.” It’s a big word around Church of the Saviour. It wasn’t so mysterious. What is my passion? What do I really care about? If you could find another person who shared your passion you could announce a call to start a new mission group. I witnessed the birth of many missions to serve the poor in Washington and around the world. Common folk who felt called stepped up to live out that call.

My call to healthcare chaplaincy followed my actually being hired to do the work. Details. But call it has turned out to be. It has been a passion that has broadened to helping all the deaths in this country to be more compassionate. When I introduced my second book, Light in the Shadows, to my colleagues at hospice in 1999, one of social workers commented, “Hank, you really have found your niche.” My immediate response was, “No. My niche found me.”

Sometimes call works that way.

He was the embodiment of servant leadership

As I sought ways to minister to severely demented patients on our Alzheimer’s unit I am sure Gordon’s influence was with me. He was the embodiment of servant leadership. In the early days of the jobs program at CofS, I worked with a housekeeping crew that cleaned apartments to prepare them to rent. Gordon came to visit us one day at a work site. He found me on my knees cleaning up the filth around a toilet. He laughed and commented, “Bet they never told you about this part of ministry at the Southern Baptist Seminary!” Indeed they didn’t, but I saw Gordon set tables at the Potter’s House coffee house or sit with a drug addict who was sorting out his life.

How could I “reach” the demented nursing home patient? Bible studies didn’t work and they couldn’t track my sermons at chapel. I found playing my guitar and singing the old gospel songs connected. I wasn’t very good but they didn’t seem to care. I also learned to hand feed patients. I would show up on the dementia unit at lunch time and tell the nurse, “I could help feed some people but I don’t want any spitters or chokers.” I am reminded of Jesus words, “Whenever you have done it to the least of these you have done it unto me.” Gordon lived those words.

Jim Wallis of Sojourners wrote, “Gordon Cosby taught us how to live by the Gospel and, in these last years and months, he also showed us how to die. In one of my many visits near the end of his life, Gordon said to me in his deep graveling voice, ‘I am enjoying dying.’ What a Gospel thing to say.”

How would my life have been different if Gordon had not given my name to the Bainums? I may have found my way to the bedsides of the dying. I don’t know. Don’t have to. He did and here I am thirty years later. Thanks Gordon.

Featured image photo credit Sojourners Magazine

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