“Surviving Hospice: An Exposé”

My book, “Surviving Hospice: An Expose” chronicles the day-to-day operations of my former for-profit hospice company. It recounts a two-year period when the company was working with a NYC Private Equity Firm. The harmful consequences stemming from that sudden change in the company’s mission, financial goals, and priorities was detrimental to patients, their families, and staff. We lost our equilibrium. The balance shifted heavily in favor of enhancing the margin of profit at the expense of patients and staff.

Subsequently, my company sold to one of the largest hospice providers in the nation. Months after I left the company, I returned to my former office on an errand to find the door handles shackled and the blinds drawn. Apparently, some agencies within the national company did not survive the severe restructuring at the hands of the NYC Investment Company and our diminished reputation in light of that – affected census. I was not surprised that our specific agency did not survive the takeover by the equity firm.

This memoir is an aggregate of what works in the current hospice market, as well as the disarray and avarice that has taken hold in many sectors. This book blows the whistle on companies that focus primarily on profit over patient. It is a Chaplain’s account of the real cost of doing business – patient suffering.

The red cardinal has long been held as the most notable of spiritual messengers.

The graying of America coupled with the commercialization and corporatization of hospice, (which was once a pastoral movement and primarily nonprofit), has transformed it into a nineteen billion dollar a year industry: these revolving acquisitions, selloffs, mergers, and recapitalizations have created tremendous wealth for corporate owners, investors, and major stakeholders.

The patient, their families, and the clinical staff working in the trenches should always be the major stakeholders for every company. My purpose in writing this book is to help consumers decipher which companies place patients as the major stakeholders.

It can be a daunting proposition to sift through online ads in search of a reputable provider when twenty-to-thirty companies pop-up per zip code. How does a consumer make knowledgeable choices with which to narrow their search?

If you follow my blog, I will be addressing the most judicious and economic manner of selecting a provider that is a good fit for your loved one and family circumstances. To begin, an established and dependable site to search for a provider would be the National Hospice and Palliative Care Organization data base (NHPCO). Their site also provides important questions to aid a consumer in their search for the right provider for their loved one.

In addition, a relatively new government website called, Hospice Compare is a compilation of providers and the results of surveys by family members based on eight categories of care for each provider. This site is based on a review system and is only as successful as the percentage rate of returns by family spokespersons after the death of a loved one.

Some people stack rocks as a form of meditation or as a memorial to a loved one.

In my opinion, the return rate is not substantial enough or consistent enough to provide definitive performance measure of a particular provider; nor is the collection of survey data an equitable tool for comparing providers. Therefore, the site is careful to caution its readers that no providers are endorsed through this method; and further, they state that the results that are compiled are only a “snapshot” of the nature of the service provided by a company

There are no official sites like a “Travel Advisor” or an “Angie’s List” with a star system that ranks hospice providers on one page.

Consequently, to aid consumers in their hospice search, the characteristics of the tools listed in my book’s vetting chapter are derived from insider knowledge: aids (for an interview) that will help unmask the real-life practices and inner motivations of a provider. There are some very good for-profit companies; but many of the complaints I receive from families stem from their poor experiences with for-profit hospices. To be fair, 85% of hospice companies today are for-profit. So it would be healthier for the entire hospice industry if there were more nonprofit, inpatient residences led by Boards of community volunteers

My book is the first to shake-down the for-profit premise that hospice business ventures are not detrimental to patients, families, and staff. “Surviving Hospice: An Expose” demonstrates a definitive correlation between those companies whose primary goal is to maximize revenue and profits (while minimizing costs), at the expense of patient care. This book outlines the steep cost not only paid by patients, but by the hundreds of professional, dedicated, and good-hearted hospice clinicians as well.

Can a business be a successful profit generator and also achieve a higher purpose – putting the needs of their dying patients and families as the primary goal? Yes, that is exactly what nonprofits must always do well: generate enough revenue to maintain sustainability to uphold their mission. But in the for-profit arena, it is an extremely difficult balancing act. If owners are primarily impelled to greedily line their own pockets first, make strategic decisions to chiefly satisfy their investors, and persist in the aggrandizement of top stakeholders (like executives and medical directors) – then in reality, the hospice patient is really only a business commodity; with no more dignity than a piece of merchandise. For all practical purposes then, the patient is a means to an end – purely a financial asset.

More than 65 million baby boomers have turned 65 in the last eight years. My book delivers the narrative of how more and more corporations and professional investors have envisioned the money-making potential of this aging population. Many of those stakeholders pocket millions of dollars buying up eldercare residences and hospice companies while swindling Medicare, wasting tax dollars, and jeopardizing the future of the hospice benefit.

As an insider, I document what it looks like when a for-profit company loses its balance; its vision; its compassion. I document what it feels like when it forgets who its target audience is and primary stakeholder – patients and their families. I tell the stories of negligence, unethical practice, and even a foray into illegal activity. I report on a period in time when my company lost its soul.

Finally, I describe the final hours of three hospice patients: one in a nonprofit in-patient residence and two in a Skilled Nursing facility (SNF) serviced by my company. Their experiences are a testament to the dissimilar realities that can occur in current palliative care, pain management, and the hospice experience in general. These raw depictions – both spiritually tender and gut-wrenching – give my book a uniquely personal and human perspective.

My purpose in writing this book is to help consumers discern the most caring and benevolent providers; whether nonprofit or for-profit. At the same time, when consumers ask my personal opinion on which organizational structure (nonprofit vs for-profit) I would choose for my own family – I tell them that I would rather err on the side of a company whose goal is to enhance patient care in its mission to benefit society (nonprofit); versus a company whose primary goal is to make money to benefit private interests and secondarily, serves the interests of the patient (for-profit).

Was I presiding at bedside for patients who were dying for dollars?

The dragonfly is a symbol of new beginnings. In almost every part of the world, it symbolizes spiritual and emotional growth, transformation, and self-realization. The dragonfly’s scurrying across water represents an act of going beyond what’s on the surface. As a hospice chaplain, I felt that the ministry that I performed as a midwife birthing souls, aided dying patients in spiritual transformation before death. The dragonfly is a significant sign for my life.
“Surviving Hospice: An Exposé”
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