Compassionate, informed advice about healthcare decision making

Posts Tagged ‘death’

Canada vs. U.S.A. at the End of Life

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Me: “Hello, this is the chaplain, Hank. I would like to come by your home for a visit Tuesday, at 10. Would that work for you?”

Patient: “Oh, hi… (pause) No, not then. How ‘bout Thursday at 10?”

Me: “Great, see you then.”

I thought of this conversation as I was digging down into a Canadian governmental report.

Why are we so different than our Canadian neighbors? We share a 5,525-mile-long border yet, in response to one question, we are miles apart. Do we really live and die that differently?

I have this nerdy side of myself. I read through medical journal articles and government reports looking for insights into all things end-of-life. The government of Canada and the State of Oregon recently released their annual reports on Medical Assistance in Dying (MAID) or, in Oregon, Death with Dignity. These are the rebranded names for what used to be called Physician Assisted Suicide.

One number jumped out

End-of-life concerns: U.S.A.

End-of-life concerns: CANADA

I’m reading through these reports and one number jumped out at me. Physicians who aided these terminally ill patients in hastening their deaths with medications were asked, “Why did the patient want to end their life by taking a lethal medication?”

In Oregon, the number one reason out of seven choices that patients gave was concern over “Losing Autonomy.” 93.3% of these patients listed that as one of their end-of-life concerns. In Canada, at the BOTTOM of a list of eleven possible concerns, “Loss of control / autonomy / independence” is only mentioned by 1.7% patients.

My interest was piqued by that “autonomy” difference. So, I contacted my friend, Tim Ward, who is now writing about his travels in Europe. He and his wife are taking “senior gap year” as in “senior citizen gap year” traveling. Tim is a Canadian by birth and has recently become a U.S. citizen.

He emailed back from Paris, “It might be that in Canada, autonomy is less of a value than, say, meaningful social connection” and “the rugged individualism of the West is part of eastern Oregon’s make up.”

Individualism/Autonomy vs. social connection

I think he is on to something here. For example, the social connection vs. autonomy shows up in how we provide healthcare. In the U.S. we do not provide universal healthcare, Canada does. There is no for-profit health insurance industry in Canada, yet everyone has access to healthcare. The U.S. system is built upon a for-profit system that leaves 8.6% (28 million) of our fellow citizens without health insurance. How we provide healthcare is just the most glaring example of how we value individual choices over the common good. Also, the social safety net is very weak for the poorest among us in the U.S. — as we witnessed in the pandemic.

I got curious about where in the world people are the happiest. Turns out, Canada (#15) and the U.S. (#16) show up next to each other in a recent ranking of the happiest countries. The top countries are in northern Europe.

From the Gallup World Poll report, “[Finland] and its neighbors Denmark, Norway, Sweden and Iceland all score very well on the measures the report uses to explain its findings: healthy life expectancy, GDP per capita, social support in times of trouble, low corruption and high social trust, generosity in a community where people look after each other and freedom to make key life decisions.”

Critics would say that’s true, they may be happier, but they pay very high taxes. The countries highest on the “Happiest” list are often labeled as “socialist” by those same critics. That’s a discussion for another time and place. The point here is that the autonomy cherished by U.S. citizens shows up in less “social support.”

The myth of the cowboy

Photo by Taylor Brandon on Unsplash

Tim’s other point, about “rugged individualism,” caught my eye because of another nerdy side of me — I read books about the American South and how we got the way we are down here. Currently, I am into How the South Won the Civil War: Oligarchy, Democracy, and the Continuing Fight for the Soul of America by Heather Cox Richardson.

Richardson is a historian with 1.6 million followers on Facebook. She writes on that platform often and produces long videos discussing various history-related topics. In this current book she explains the growth of the “myth of the cowboy,” the ultimate “rugged individual.” According to her, since the late 19th century, Americans have bought into this idea that anybody can attain whatever they want, that this country was built by autonomous “rugged individualists.” This is a myth because wealth actually went to a few elites from the days of the Founders to today.

Our founding documents lay out this contradiction in spades. The same property-owning White men who wrote, “All men are created equal,” enslaved Black people and did not give women or poor Whites a vote. We, as a nation, have been struggling with this contradiction ever since. Although Canadians do not have the history of slavery we do, we both share shameful treatment of indigenous peoples. Also, a discussion for another time and place. The point here is lionizing the “rugged individual” can show up as valuing autonomy at the expense of social connection.

Pastoral care at the end of life and autonomy

The phone exchange with the patient was typical of many we had over the months I was his chaplain. He ALWAYS chose another time. As a chaplain for those at the end of their lives I am always looking for ways to enhance autonomy, because I know it is so important to most of us. I gladly changed my plans. I figured this was my little way of affirming his autonomy.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

“How effective is chemotherapy?” — That is the Question

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Would you spend $100,000 on a cancer treatment with many painful side effects that might help you survive 6.24 months as opposed to 5.91? That is 10 days longer in greater pain and suffering?

What if the doctor told you just that “this treatment will help you survive longer”? This is a true statement even though you might only survive 5.6% longer. That IS longer.

I have just discovered two great videos with Dr. Michael Greger discussing this very topic. Each video is less than seven minutes and worth every minute of your time. One is called “How Effective is Chemotherapy?” and the other is “How Much Does Chemotherapy Improve Survival?”

Let me be clear. I have no idea what I would do if I had a cancer diagnosis. I have close friends and family members who had advanced cancers and have been treated very successfully and are living active lives years after their treatments.

On the other hand, I have had patients, and, again, close friends and family members who received brutal chemotherapies and died. Many of those seemed to have received no benefit from their treatments and suffered great burdens. Many patients go bankrupt in order to pay for treatments.

Dr. Greger, in the first video says, “A large proportion of cancer patients reported their willingness to declare bankruptcy or sell their homes to pay for treatment. I mean, look, aren’t the high prices justified if new and innovative treatments offer significant benefits to patients? But you may be shocked to find out that many FDA-approved cancer drugs might lack clinical benefit.”

In his second video he referred to a study reported in the Journal of the National Cancer Institute. “In fact, the most expensive drug they looked at, the one costing $169,836 a year, did not improve overall survival at all, and actually worsened quality of life. That’s $169,000 just to make you feel worse with no benefit. Why pay a penny for a treatment that doesn’t actually help?”

I am NOT giving medical advice here. I am encouraging all of us to ask questions of our physicians. If a recommended therapy is said to improve survival, ask, “How much improvement?” Is it just 10 days over six months while suffering uncomfortable side effects? Ask about cost. Would I be willing to spend my financial legacy for those 10 days?

This all reminds me of the importance of our own emotional and spiritual preparation for dying. When “our time” comes we will be ready to die… or be healed. Either way, we’re okay.

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Cover Photo by Marcelo Leal on Unsplash

Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

Hank’s 2021 Books on the Spiritual Side of Science

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When I explore the secrets revealed by science, I feel in the presence of something sacred. As I looked back on my 2021 books written by scientists, they all had a spiritual spin to them. I started my review of books last week. Here are my books on the Spiritual Side of Science, reads for the year:

Searching for Stars on an Island in Maine (2018) By Alan Lightman

“As a physicist, Alan Lightman has always held a purely scientific view of the world.… But one summer evening, while looking at the stars from a small boat at sea, Lightman was overcome by the overwhelming sensation that he was merging with something larger than himself — a grand and eternal unity, a hint of something absolute and immaterial.”

 

 

 

Almost Human: The Astonishing Tale of Homo Naledi and the Discovery That Changed Our Human Story (2017) By Lee Berger and John Hawks

My interest in human evolution stems from one of my core spiritual beliefs — that the self is an illusion. My work with the dying, my reading death and dying literature, my contemplation of the mystics, and my pondering of my own Christian beliefs led me down this path. I am curious about how we evolved from being animal-like with no sense of self to being self-aware. Genesis pinpoints the moment when Adam and Eve’s eyes opened, and they saw they were naked — they became self-aware. This book is just another piece of this puzzle looking into our human ancestors. “This is Lee Berger’s own take on finding Homo Naledi, an all-new species on the human family tree and one of the greatest discoveries of the 21st century.”

The Home Place: Memoirs of a Colored Man’s Love Affair with Nature (2016) By J. Drew Lanham (audio read by the author)

Lanham is a “birder” with a PhD from Clemson University, where he teaches. He touches on two themes close to my heart — love of the outdoors and growing up Southern. Lanham’s viewpoint is that of a Black man who descended from generations of family in South Carolina, whose professional field is almost entirely comprised of White scholars and birders. “By turns angry, funny, elegiac, and heartbreaking, The Home Place is a remarkable meditation on nature and belonging, at once a deeply moving memoir and riveting exploration of the contradictions of Black identity in the rural South — and in America today.”

 

Useful Delusions: The Power and Paradox of the Self-Deceiving Brain (2021) By Shankar Vedantam and Bill Mesler

I have long been fascinated by the placebo effect and reviewed this book in a previous blog about my experience with it. Our delusions are not only helpful in medicine but marriage, too. Here is a quote from the book: “The researchers found that the couples who had the most inflated views of their partners — the ones who saw their relationships with the greatest degree of self-deception — were the happiest. This is hardly a new idea: Benjamin Franklin once offered the advice, ‘Keep your eyes wide open before marriage — and half-shut afterward.’” Vedantam hosts a great podcast, “Hidden Brain.”

Illness as Metaphor (1978) and AIDS and Its Metaphors (1989) By Susan Sontag in one audio program

In the 1978 monograph, “Sontag shows how the metaphors and myths surrounding certain illnesses, especially cancer, add greatly to the suffering of patients and often inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag shows cancer for what it is — just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is highly curable, if good treatment is followed.” She then expands on this regarding AIDS. The backstory of these two pieces is that she twice “beat” cancer with treatment. She died of the disease in 2004. Her son, David Rieff, wrote of the tragic (in my view) ending of her life in Swimming in a Sea of Death: A Son’s Memoir.

Blue Mind: The Surprising Science That Shows How Being near, in, on, or under Water Can Make You Happier, Healthier, More Connected, and Better at What You Do (2014) By Wallace J. Nichols

It is no secret that I get spiritual refreshment from paddling my kayak. I did a video while on a kayak trip in the Mississippi Delta where I mentioned this book. The subtitle says it all. We humans benefit spiritually by being near water.

 

 

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

 

Me: “I’m the chaplain.” Patient: “Oh God NO!”

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I started our first meeting as I have hundreds of times before and since, “I’m Hank. I’m the chaplain.”

The response from our new hospice patient took me aback, “Oh God, NO!”

One of the great things about being a chaplain is that, generally, people are glad to see you.

…Let me restate that: People are not glad that they are in hospice and need to see a chaplain. People who are seriously ill and dying are usually pleased to see the chaplain. My standard greeting on a first meeting is, “I am glad to meet you but sorry for what has brought us together.”

An invitation to revisit my experience as chaplain

 A recent “GeriPal Podcast” has caused me to reflect on my years as a healthcare chaplain. That’s “GeriPal,” as in geriatrics and palliative care. “Spiritual Care in Palliative Care” is discussed by three chaplain educators and trainers and the two physician hosts.

Years ago, by chance, I became part of an experiment to find out how people actually felt about the prospect of seeing a hospice chaplain. I was the only chaplain working out of the Loudoun/Western Fairfax office of the Hospice of Northern Virginia.

When a new patient came into our service, the admitting nurse would ask the patient or family, “Would you like to see the chaplain?” About 30% said, “Yes.” Even at that low rate, my caseload was getting too much for me to cover adequately.

Then, something very fortuitous happened. We merged with another hospice, and suddenly, we had another chaplain to cover the whole eastern half of the region.

Now, we were looking to find a way to increase the caseload to fill this new abundance of chaplain hours. We changed from a question (“Would you like to see the chaplain?”) to a simple statement from the admitting nurse — “The chaplain will be calling to set up an appointment in a few days.” Bingo! We went from seeing 30% of the patients to seeing more than 75% overnight.

Why would so many people go from saying “No” to a question to so willingly accepting a call from a chaplain?

There are all kinds of reasons people said “No” to the question. Perhaps saying “Yes” implied, “I am not spiritual enough and need help.” Or people think of chaplains as “religious” and “I am not religious.” Or maybe accepting a visit from the hospice chaplain means, “I don’t think my pastor is good enough.”

Or, maybe it’s the reason the man who said, “Oh God NO!” had when I introduced myself. I asked him, “Why did you respond like that?” He immediately said, “I don’t want to die.”

Oh my goodness. He was equating meeting the chaplain as meaning he is going to die. In his mind, you only see the chaplain when you are dying. In truth, to be admitted to hospice, he had to acknowledge that his physician was estimating that he had only six months to live. Perhaps, he had seen too many movies with a chaplain escorting a prisoner to the gas chamber or a chaplain comforting a dying soldier.

I used that first visit to assure the man he didn’t have to die just yet. I told him people flunk out of hospice all the time by their condition improving. In my mind, I could explore his fear of death in a future visit. But it was not to be.

He had another stroke and never spoke another word. His pastor and I could provide general words of comfort and encouragement in the face of the fear of death, but we had no idea what he was thinking.

So, people refuse to see the chaplain because seeing the chaplain means, “I am dying.” The ill-founded logic goes, “Asking to see the chaplain means I am dying. I don’t want to die. Therefore, I will refuse the chaplain visits and will not die.”

I wish it were that simple.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

“God has told me my wife is not going to die!”

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“God has told me my wife is not going to die!” That’s how my new hospice patient’s husband greeted me.

The nurse warned me that this was coming. The patient had breast cancer that had metastasized to the bone — a usually fatal prognosis.

Photo by National Cancer Institute on Unsplash

He went on to say, “I don’t want any talk about death or dying, only hope and healing.” Months before, I was asked not to return to a home where I had pushed a family to discuss possible death before they were ready.

I was wrong then, and I did not want to blow it again. As a chaplain, I was a guest in their home, so I would abide by his rules. I did say that if the topic of death came up, I would pursue it but would leave it up to them to introduce it. Until then, hope and healing.

Hope and optimism are all around us

There is hope at weddings. I have led many couples to repeat the phrase, “Till death do us part.” One pair deleted this phrase from their vows. It was his third marriage and her second. Another bride asked me to remove, “for richer, for poorer.”

The couples who didn’t edit their vows were being optimistic. The truth is half of all marriages end in divorce.

There’s hope in business. Would entrepreneurs start new ventures if they were not hopeful? Sure, they have a business plan and capital. Yet, there has got to be some self-deception, a bit of hopefulness in the face of long odds.

People who study such things call this self-deception the optimism bias. “The optimism bias is defined as the difference between a person’s expectation and the outcome that follows. If expectations are better than reality, the bias is optimistic; if reality is better than expected, the bias is pessimistic.”

Diversifying hope

It turns out optimists are happier and live longer than pessimists. I wrote in a previous blog about how the self-deception of the placebo effect can take away pain. With these kinds of benefits, so what if an optimist’s expectations are better than reality?

The Journal of the American Medical Association recently published an opinion piece, “Holding Hope for Patients With Serious Illness.” It is about doctors who encounter patients or family members who are hopeful for a happy outcome in the face of a fatal illness. What do they do? They don’t take away the hope but diversify it. Here is their summary:

“How can clinicians help patients hold multiple hopes? One approach may be to ask patients what they have heard about their prognosis from their clinical team. Patients could then be asked, ‘Given what is coming, what are you hoping for?’ It is not necessary to contest the answers nor convince patients to consider other futures. Instead, the clinician could acknowledge the response and ask, ‘What else are you hoping for?’ And then again, ‘What else?’ The point is to help patients balance and diversify their hopes, providing flexible future directions and possibilities.”

“Satan is trying to get me to doubt it.”

I stumbled onto this idea of diversifying hope on my own with the husband who heard a message from God. As I arrived for one visit, he was about to leave for work. He said, “Hank. You know how I said, ‘God told me my wife is not going to die’? Well, I still believe that, but Satan is trying to get me to doubt it. Would you pray for me?” I said I would, and he left.

I turned to the wife, who had just found out the cancer had spread to her liver. “Do you have as much confidence as your husband that you will not die?” She burst into tears and said, “I am afraid if I die, my husband will be disappointed in me.” My heart sank for them both.

Photo by Gus Moretta on Unsplash

On the next visit, I sat with the two of them. I told the husband about my conversation with his sick wife. He immediately got up from his chair, took this poor woman’s hand, and said, “I would never be disappointed in you. You have done all you can to fight this.”

I told them I had two concerns about people in their situation not contemplating the possibility of death. One was some people, believing a patient is not dying, refuse narcotics for extreme pain. (This was not the case with these two.) My other concern was that they might miss some crucial conversations. Conversations about their love for one another, saying good-bye, or finding ways to live fully in the limited time she had left.

The couple assured me they had been doing that, too. They were still hoping for a cure, but they also hoped for enough time to say all that needed to be said. They hoped for freedom from pain by accepting pain medication.

They had already diversified their hopes.

Aging as a Spiritualizing Process — Part One

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“Growing old is no good,” the 95-year-old nursing home resident told me. I asked her when it got to being “no good.” She thought for a moment and then said, “About 80.”

“What made it ‘no good’ at that time?” I wanted to know. Without hesitation she said, “When I couldn’t do things for myself anymore.”

I told her daughter of this conversation and she said, “Oh yeah, it was about that time I came into her home, and she was standing on the kitchen table changing a light bulb in the ceiling fixture.”

This resident perfectly summarized the fear of aging; the issue is really the loss of independence. Who wants that? But decline and dependence is the future for most of us, except for the few who will die suddenly while still active.

The minister’s role of “presence and witness”

That conversation, which I also recount in my book, happened over thirty years ago. The young(ish) chaplain who heard those words is now part of the “elderly class.”

So I thought of my own elderly status and that long ago conversation as I read a recent article from Kaiser Health News, “Minister for Seniors at Famed Church Confronts Ageism and the Shame It Brings.”

Rev. Lynn Casteel Harper of the Riverside Church in New York City, sees her role with congregants in their decline as one of “presence and witness.” “Sometimes if people are going through really difficult experiences, especially medically, it’s easy for the story of the illness and the suffering to take over,” Rev. Harper said. “Part of my role is to affirm the other dimensions.”

Harper is right — it’s about presence. I found it was the same in ministering to nursing home residents and hospice patients. I could not take away the pain of loss of independence. I could not lighten the heavy weight that serious illness put on my patients’ psyches. But I could be present.

It was, in a way, easy. I just had to show up.

Acceptance of death without fear — why wait?

I was drawn to another of Harper’s comments. Yes, old folks do worry about what their last days will be like — whether there will be suffering. But she “rarely encounter[ed] a fearfulness about what will happen when someone dies.”

This acceptance of death without fear is common. It may or may not have a religious element to it but, in general, those approaching death have reached a degree of serenity. Acceptance without fear.

I say this acceptance is a spiritual process whether one expresses it in religious terms or not. In a sense, aging forces this spiritual acceptance upon us all. We could do it earlier in life, and many do, but toward the end, after losing independence, we tend to accept and just let things be.

If we could learn how to accept the certainty of death earlier in life, our whole life could be more peaceful. Growing old forces this spiritual practice upon us. This is just one facet of aging as a spiritualizing process.

My Life At 100

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I made it to one hundred! 100. The Big One-Oh-Oh.

This is my 100th blog post. It took a while. I started blogging in 2011 and made six blog posts that year. For the first nine years, I only published 51.

From my very first blog post, May 11, 2011: “How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years.… 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.”

(BTW, shout out to Kelly Brachle, of Quality of Life Publishing Co., who edits my ramblings into a coherent thought. And while I am shouting out, nothing leaves our home without the approval of my wife as she stands in for the “average reader” [when I showed her this post, she reminded me she is “above average”]. More than once, her suggestions have saved me some embarrassment.)

It’s all about the stories — family, friends, wilderness

Although I often stick to the theme of making end-of-life decisions, other topics get some attention. I share my own family’s experience with death and dying, like with my mom’s decline and death in “How did your mom feel about her dementia?” Grief is a repeated theme, like my recent post on the funeral ritual for my brother 42 years after he died.

I really try to tell stories, like the post about my friend who died with dementia. I wrote about our friendship since junior high and how we fished together in the years before his death. Occasionally, I share my adventures in the wilderness, like the one about my love of swamps.

I have been writing my whole adult life – before the days of the blog. A few of those older writings made it into the collection. I reprinted a story about riding my bicycle the length of the Outer Banks from a 1993 newsletter published by the nursing home where I was chaplain. For several years following a difficult time in my life, I sent letters (essays, really) to family and friends. In a 2014 post, I shared a piece I did in 1998 about my friend, mentor, and author, Elizabeth O’Connor.

Writing and videos for short attention spans

We have become a people with short attention spans, so I try to limit each post to about 500 words. I have even ventured into producing two-minute videos on various topics. Sometimes I’ll tell the same story in both formats. I did a blog about the lesson my father taught me about letting go in the blog “How to get to ‘It doesn’t Matter!’” I then did a YouTube video about the same story.

By the way, you can subscribe to my YouTube channel and look through my “Hank’s Deep Thoughts” playlist.

I have found that writing for others helps me think things through. I can clarify thoughts in my mind when I have to explain things in a way others can understand. So even if no one else reads these, I will keep on writing these blog posts.

Oops! I just passed 500 words. Bye!

Randomness, Death, and Mystery… It’s Okay

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Do you ever do this while reading random obituaries?

I see some person, about my age, who died of cancer. I read on and see it was lung cancer. I’m relieved. Obviously, they smoked. I don’t smoke. I won’t die.

Then, I read, a healthy person about my age dies suddenly from an undiagnosed brain aneurysm. No warning. They just drop dead. A random chance occurrence like a victim of a mass shooting at a grocery store.

We humans look for patterns — for reasons “why.” Some find comfort in the idea (*SPOILER ALERT* — not me) that God is in control of everything and sends some people a quick, unexplained death.

There are no accidents… or not?

I conducted a graveside funeral service years ago as a hospice chaplain. A woman came up to me after the service and told me her story. “A couple of years ago, my eight-year-old son was playing on the swing set in our backyard,” she started. “He jumped off the swing, fell on his head, broke his neck and died instantly. In my grief someone sent me a card that said, ‘With God there are no accidents.’”

I thought (but didn’t say), What a horrible thing to tell a grieving mother. God killed your son. Before I responded, I studied her face to see if I could catch some glimpse of how she received this message. I didn’t have to guess. She told me, “Those words have been so helpful to me.”

I was almost speechless. This woman is a complete stranger and I have no pastoral relationship with her. I would never want to take away a word that was helpful to her. I must have said something like, “I am so thankful that was helpful to you. It must have been a horrible time.”

What do I know? The card may be right.

Everything happens for a reason?

Contrast this with best-selling author Kate Bowler and her book Everything Happens for A Reason: And Other Lies I’ve Loved. The book jacket describes her situation:

“At thirty-five, everything in her life seems to point toward ‘blessing.’ She is thriving in her job, married to her high school sweetheart, and loves life with her newborn son. Then she is diagnosed with stage IV colon cancer.”

Bowler is an academic who has studied the “prosperity gospel.” That would be the megachurch televangelists who teach that if you just believe hard enough (and make a contribution) only good things will come your way. In her research, she saw the downside of this belief is that when you’re thrown life’s random tragedies you are left feeling like a loser.

Do yourself a favor and watch her TED talk on YouTube. Over six million people have viewed this 15-minutes of wisdom. She has learned to live with mystery… with randomness… with not having a “reason.” And it is okay.

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