As a freelance editor, I have the opportunity to work on all kinds of projects, and one author I am extremely proud of is Maryclaire Torinus. A former hospice chaplain, Maryclaire had a powerful, poignant, and hard-hitting story to tell when we met. Unlike some manuscripts, it didn’t fit neatly into one particular category. She had beautifully written patient stories to share, chronicling their emotional final days, but this was more than a memoir. It was also an exposé that spotlighted the inner workings of for-profit hospice providers run by professional investors and the harmful effects on patients, families, and staff. Not only that, but it’s also a how-to guide for families. It’s a must-read book for families exploring hospice care and is truly an eye-opener. Below, Maryclaire shares how she blended enlightening stories at the bedsides of dying patients with the facts and statistics of investigative journalism.
After wading through a mountain of research and working on my hospice narrative for six years (on and off), my book was released in mid-October with the Manhattan Book Group in NYC, a hybrid publisher. Surviving Hospice: A Chaplain’s Journey Into The Business Of Dying has finally found a home in the marketplace.
Early on, when fellow authors questioned me about the genre, I couldn’t quite put a finger on the category. It was complicated. My first attempt at writing this narrative was as a creative nonfiction piece; it seemed to fit my premise the best. In my lap, I had an expose written from a chaplain’s perspective sitting at the bedsides of dying patients. An untold story. Indeed, I had a lot of stories—those of my patients and my personal experiences during that period—and a poignant memoir was in the works.
However, when our company was purchased by a NYC equity firm (unbeknownst to us) and our hospice mission changed, our resources shriveled to the most basic care to increase the profit margin. Our best clinicians left for other hospice companies. The consequences of the new financially-motivated policies began to trickle down onto the beds of patients and into the lives of staffers. The harm occurring in our company, corroborated by negative hospice headlines appearing across the nation, was frightening.
Consequently, when the investors had evolved into the primary stakeholders of our hospice company, I started to possess more and more sobering statistics on the harm to patients from our lapse in care— separate elements—but, all based on a unifying theme. So, I needed to conflate the interaction of true events, facts, ideas, patient stories, and my personal experiences. I needed to gather the information and organize the literary styles into something that resonated with my readers. A clear, logical, unified, well-paced description that didn’t come across as a stuffy newspaper article. I knew I would need help.
My first attempt to begin my book was based on the current reality of the hospice market. The graying of America, coupled with the commercialization of the hospice benefit, has transformed hospice from a mission of mercy into a multi-billion-a-year healthcare enterprise. Every sector of society has been preparing for an aging world. Consequently, senior nursing care coupled with the hospice market is expected to grow into a $550 billion-a-year market by 2024. Nobody wants to die. But death is inevitable; so then, no one wants to die badly. Good hospice care offers the best hope for dying well and living fully until we do. Doula workers tell me that ‘their goal is to restore death to its sacred place in the celebration of life.’ As a result, consumers needed to understand the revelations highlighted in the July 2019 report released by the Department of Health and Human Services. Blah, Blah, Blah.
My book now begins with stories so my readers want to keep turning the pages.
In my third week on the job, I arrived at 7:30 a.m. and bumped into one of the medical directors at the front desk. The first words out of his mouth were, “I’m glad I’m not in your shoes right now.” He cocked his head toward the conference room. My pulse quickened as I rounded the corner and stopped just short of the conference room door to find members of my interdisciplinary team gathered inside around an oblong table, drinking black coffee. No doughnuts or creamer in sight.
No idle chatter, just heads huddled. When I entered the room, four somber faces turned to me in unison. As I pulled up a chair, Sandy, the registered nurse announced, “A chaplain is the most qualified person for this situation. You should go first. They all nodded.”
The Health Insurance Accountability Act sets standards and regulations to protect health information and patient privacy. To maintain these standards in my narrative, I reviewed the guidelines for confidentiality in the HIPPA. I was not able to locate the families of my deceased patients, so I fictionalized identifying information. The stories I related were a composite of my actual experiences ministering to patients and families over the course of my hospice internship and clinical career. Chaplains are trained to retain patient information and to archive it for documentation. We learn to write verbatims (word-for-word notes) during hospice visits to accurately record patient comments and the type of counseling provided at each appointment. I also learned to keep extensive notes on my patients to accurately reflect their lives to deliver heartfelt eulogies at their funerals.
Obviously, it would become necessary for me to look for the intersections or commonalities between the seemingly disparate categories: memoir, a how-to guide, and the sobering statistics of an end-of-life medical industry suffering under the sway of professional investors. Often, the two hundred sixty-five pages of patient accounts, my personal stories, statistics, and horrific facts seemed to take on a life of its own, more like a living species. It seemed too unwieldly to manage.
Therefore, it was not surprising that my first attempt to consolidate the breadth of my work was not satisfactory; the order was not compelling. I had begun the first chapter with the nuts and bolts of the current hospice market. The tempo was stoic and plodding, and I hadn’t captured the emotion and drama of what really occurred at my for-profit hospice company. I needed to rethink the approach.
As I began to query agents, it had become clear to me and to them that I had two books in the works: a memoir and a research-driven investigative piece. A lot of agents were interested in my timely topic and requested that I write two separate accounts of what had occurred at my former company. But I wasn’t interested in that approach. Writing one book was challenging enough. Sometimes a writer needs to do what I writer needs to do and that’s what I did. I said thanks, but no thanks. In the end, I did what was best for me. I didn’t want to write two books; I wanted to use my patient’s experiences to deliver the statistics.
And to be honest, I was weary of jumping through the hoops sometimes demanded by agents and owners of independent publishing firms. It’s important for authors to have boundaries and to be true to themselves. So, it was on me to figure out how to compose a unified and fluid account for the benefit of my readers and the integrity of my patients. One agent suggested I write an annotated outline of each chapter (which was a lot of work) to clarify the goals of my writing, and what order would best address my broad target audience: hospice consumers, hospice clinicians, chaplains, professional hospice trade organizations, lawmakers, lawyers, and medical personnel.
I also began to search for books that had similar themes as mine to see how the authors managed to mix stories with statistics. I stumbled upon the book called The Big Short: Inside the Doomsday Machine by Michael Lewis. He utilized a character-driven narrative to tell how professional investors foresaw the collapse of the mortgage market in 2008 and then pocketed millions from their bets. The Boston Globe wrote about his style, “Lewis expertly describes a broken financial system that rewarded bad decisions and fraudulent alchemy, and then shifted the inevitable losses to the strapped U. S. taxpayer.”
My premise was so similar; it addressed the hijacking of hospice by private equity firms to generate wealth and the subsequent harm to dying patients, the hospice staff, and the image of the hospice Medicare/Medicaid benefit. Professional investors in the hospice market also left taxpayers holding the bag for their gaming of the hospice system. So, I decided to begin my narrative with the poignant stories of dying patients in pain and weave the data and facts of the current state of hospice care through those heartbreaking stories.
At this stage, I knew that I had at minimum, a solid memoir on my desk, but I still needed to jettison my two genre conventions (memoir and data-driven journalism) in a way that would keep my narrative from becoming too broad and confusing. Like Manhattan Book Group, a combination of traditional and self-publishing, I was creating a hybrid genre. I understood that stories were powerful and if the readers could just fall in love with John, Martha, Helen, George, and Mark, the statistics would bear the faces and voices of real people. Consequently, I decided to cordon off the information into three sections.
Part I includes how I ministered to my patients and their families under the selfish motives of a greedy owner and under the restraints of professional investors who had purchased our company (memoir). Part II includes the qualities of a reputable hospice provider and how to locate a trustworthy provider. Part III addresses the results from the 2019 OIG Report on the state of hospice care across the country, and what might happen next to dispel professional investors from end-of-life medical care. I also needed to include end notes and an index after the second and third sections of the book. In my preface, I explain to readers how to read through the schema of my narrative.
This partial list of chapter titles will give you an idea of the memoir section.
Part One – Spiritual Stories of Crossing the Threshold
Going Back * The First Year * On-Call * John and Martha * A Bullshit Barometer
Dark Nights * Secrets Lie in Shadows * A Day Away From Death
A Company Ruse Backfired * Let Them Eat Cake * The Quantum Leap
Part Two – How to Make What’s Invisible, Visible
Qualities of a Reputable Provider
How to Find a Trustworthy Provider
Behind the Window Dressing
Part Three – Helping Hospice Return to its Roots
Dying for Dollars
Weak Oversight Breeds Neglect
The US Government Sound the Alarm
As I was preparing to submit this beast to hybrid publishers (who do not accept every manuscript submitted), I hired Stacy Juba to do a thorough developmental edit of my second attempt to consolidate the unruly information into a unified structure. She did a fantastic job. I never could’ve gotten the professional results to publish this crucial and timely book without her expertise, experience, and talent.
About the Author
Maryclaire Torinus received certification in Clinical Pastoral Education for Chaplaincy at St. Camillus Senior Living Residence. She worked as a hospice chaplain and as a hospice consumer advocate for eight years. She also worked for two years as a pastoral counselor in an acute-care wing of the Milwaukee County Behavioral Health Complex. Maryclaire is a Wisconsin native and met her husband, Mark, in the fifth grade. She and Mark were married for 37 years until his passing in 2013. They have three children and three grandchildren.
Hi there! I’m Stacy Juba, an author, freelance editor, and the founder of Shortcuts for Writers. I’d love to connect. If you’re a writer, here are a few ways we can work together: