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Hard Choices for Loving People, Third Edition: “I Guess I Am Feeling Guilty…”

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

With tears in her eyes my friend said, “I have to make a life-and-death decision about my mother.” She didn’t know what to do. The mother was nonresponsive in the hospital and on dialysis. Her mom had said she never wanted to be on dialysis and the physicians caring for her said it was not doing any good.

I said to this distraught woman, “This is not a hard decision. Of course, you take her off dialysis for all the reasons you just gave me. What’s going on here that makes this so difficult?”

She replied, “I guess I am feeling guilty because I haven’t visited mom enough.”

I wrote of this story for the first time in the 1994 Third Edition of Hard Choices for Loving People. In the first two editions I had written just five paragraph about the emotional and spiritual struggles people encounter while making end-of-life decisions. In the third, I expanded this discussion to nine pages, about 20% of the book.

Spiritual and Emotional Concerns Became Important

In my very first blog post, I wrote about how this story became a metaphor for me. For patients and families end-of-life decisions are primarily emotional and spiritual. The expanded Third Edition reflected that new-found emphasis. I also added a fourth question to help with end-of-life decisions: “Can I let go?”

FULL DISCLOSURE HERE: I am a chaplain and tend to see spiritual issues in a lot of places.

A physician requested permission to use JUST the first chapter of my book to help him and his staff guide patients deciding about CPR. I asked him for specifics on how it would be used. He called back a few weeks later and said he no longer wanted to separate out that chapter. He explained, “I told the nurses what I wanted to do, and they said, ‘You can’t do that. You can’t talk about CPR without discussing the emotional and spiritual sides of these decisions.’”

This part of Hard Choices for Loving People has worked well. I was able to present the emotional and spiritual concerns in a way in which anyone could identify. All kinds of facilities have bought the book: Catholic, Baptist, Seventh Day Adventist, Jewish, Methodist, and Presbyterian hospitals and nonreligious organizations including VA-, academic-, and for-profit hospitals.

On the Road Speaking and Moving to Hospice

The wide distribution of Hard Choices for Loving People brought me invitations to go on the road to speak. I presented mostly to professional groups about helping patients and families with end-of-life decisions.

I also made a job change in 1996, leaving the nursing home and becoming a homecare chaplain with the Hospice of Northern Virginia. I hesitated in taking the job at first. I was concerned that by leaving the nursing home and going to hospice I might lose some authenticity in promoting how to have a peaceful death. I was worried that being a hospice chaplain people might say, “Of course he recommends that patients receive less aggressive care at the end of life — he’s a HOSPICE chaplain. What did you expect?”

I made the move anyway and I am so glad I did. I cannot say enough good things about my experience as a hospice chaplain. You get to visit with patients and families in their own homes. The team I worked with was the best. Although facing death is still very difficult, just being in hospice made patients and families so much more open to preparing for this last phase of life… and they let me be part of that.

Third Edition Statistics:

 

  • Subtitle: CPR, Artificial Feeding, Comfort Measures Only and the Elderly Patient
  • Publication dates: 1994-2001
  • Third Edition books sold: 589,163
  • Total books sold: 831,842
  • Length: 44 pages
  • Endnotes: 68

 

Key content introduced in the Third Edition:

  • A fourth question to help with end-of-life decisions
    1. What does the patient want?
    2. What is in the best interest of the patient?
    3. What are the prognosis and probable consequences if a certain treatment plan is followed?
    4. Can I let go? If the answers to the first three questions point to withholding or withdrawing treatment, then this is the most difficult question.
  • New chapter on “Hospice and the ‘Comfort Measures Only’ Order” to help people make a decision regarding hospice and palliative care.
  • A list of three possible goals of medical care: 1) Cure; 2) Stabilization of functioning; 3) Preparing for a comfortable and dignified death.
  • A section discussing hospitalization for frail, failing, elderly patients.
  • Endnotes for healthcare professionals to have confidence that Hard Choices for Loving People was backed up by solid research in medical literature.

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?
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