Expanded Bibliography

Addendum to Notes’ Bibliography

Since publishing Notes From the Waiting Room: Managing a Loved One’s End of Life Hospitalization and How to Efficiently Settle the Family Estate I’ve discovered more books (and a great music CD) worthy of inclusion in Notes‘ bibliography. Here are subsequent additions. The Best of the Best are immediately below; click here to scroll to new The Rest of the Best entries. The very best—absolute must-reads (or hear) appear in red.

Recommended Reading | The Best of the Best

Awake, (CD), Steve Price RN, singer/songwriter/guitarist, Steve Price Productions, 2007
I don’t crow about it but I’m an ex-pro musician. I played fusion drumkit, and have experienced some of life’s most ecstatic moments during live ensemble performance. So I listen very carefully to music, to its arrangements and recording production. I await, delight in, and repeatedly listen to nuances of composition, timbre, and performance. Take good writing, composition, arranging, and production, then add brave lyrical content and you have Steve Price’s Awake: 12 original bluegrassy-folk-country songs addressing mortality, our medical course, and last-phase-of-life meaning. It’s common knowledge that we need to start talking. Song is artful speech. Steve sings, “we see God’s perfection and we see our own reflection, all in the service of you.” Steve’s work perfectly reflects the common experiences of lay people and providers alike. Steve’s work can’t raise the dead, but does raise our spirits—explicitly because of it’s honest focus on dying and death. Buy Steve’s CD. Support his work. Listen to samples at cdbaby.com/cd/steveprice.

My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for Your Aging Loved Ones, Dennis McCullough, M.D., Harper Perennial, 2009
This book now occupies my top tier of the best three books to read, to start with, to learn how to advocate and revision the end of life. My book offer views mostly from a mid level (with some “boots on the ground” guidance); Julia Hallisy’s work (immediately below) puts you right in the trenches; My Mother, Your Mother gives you a forecasted overview of how we age. It’s the ultimate road map to our likely futures. Dennis identifies a series of stages and describes what triggers entry into each, what to expect there, and how to manage them. This makes for a potentially a challenging read; if so digest it in spread-out sittings or read one or two chapter in advance of your elder loved ones’ arrival at them. Dennis is perhaps America’s foremost proponent of the nascent Slow Medicine movement (originating in Italy, growing out of the Slow Food movement there), which suggests not rushing into medical places which we ought to fear to tread, and the book is imbued with guidance for avoiding painful, peace-crushing over-medicalized dying.

The Empowered Patient, Julia Hallisy, D.D.S., Bold Spirit Press, 2008
Dr. Hallisy’s meticulous book is now occupies my #1 slot for best patient advocacy guide (aside from Notes, that is). Hallisy’s dental background gives her a superb organizational thoroughness, yet this level of doctoring does not make her a “tree” in the medical “forest”; she remains more a lay person in her viewpoint. Hallisy spent more than decade dealing with profound matters in hospitals; her daughter contracted a life-threatening illness at 6 months and died about a decade later. Hallisy’s guidance is rock-solid. Together with Notes and Hospital Stay Handbook (see Notes’ printed bibliography) you’ll have triumvirate of citizen-authored advocacy books and a complimentary series of resource guides for managing any hospitalization in either acute curative or end-of-life contexts.

Severed Trust: Why American Medicine Hasn’t Been Fixed, George D. Lundberg, MD, Basic Books, 2000
Lundberg is a former editor of JAMA (Journal of the American Medical Association). His knowledge is the political and operative history of medicine is encyclopaedic. Severed Trust offers insights and resources I’ve not found elsewhere, discussing the internet, the role of autopsies in patient safety, issues of informed consent (an oxymoron in my experiences), and quandaries around dying and death. Severed Trust is explanatory, not at heart a guidebook. Although I’m unsure who Lundberg feels his audience is, reading this work has taught me. That’s enough to add it to this list.

Fatal Care: Survive in the U.S. Health System, Sanjaya Kumar, MD, IGI Press, 2008
Hallelujah and finally: a patient advocacy book written by a doctor. Based on true stories, including several of my colleague patient advocates. Kumar’s nuggets are found at the end of each chapter, where he details critically important things to know and do when a loved one is hospitalized with the various conditions exemplified by the stories. OK; this list of bibliography additions is getting long. To quote Ian Schoales of the Duck’s Breath Mystery Theatre, “that’s the comfort, and that’s the terror.” Put Fatal Care in your library.

You Bet Your Life!: The 10 Mistakes Every Patient Makes, Trisha Torrey, Langdon Street Press, 2010
Trisha Torry is a citizen-force in the patient advocacy world, building a reputation as Every Patient’s Advocate. With You Bet Your Life!, Trisha joins the few citizen-authors regarding advocacy and hospitalization. The ten mistakes are actually topics which Trisha examines with insight borne of experience. Read this book, act on its guidance, then add it to your reference library.

A Palliative Ethic of Care, Joseph J Fins, M.D., Jones and Bartlett, 2006
Docs have their own language, the language of science and of the academy. Hearing it can be maddening since patient-family experiences—and Notes—emanate from systemic shortcomings and failures, and our gut-level response to them. Fins’ language is strangely comforting, partly because I’m now familiar with discussions of hospitalization’s nature, partly because A Palliative Ethic of Care is prosaically written for med students—meaning that you, the lay reader, can follow along. Part I neatly summarizes the medical, legal, and social history leading to palliative care. Very importantly for our purposes, it explains why things happen by default during end-of-life hospitalizations, thus making the implicit case for patient-families who opt to leave the curative “freeway” early on to enjoy the remainder of life on palliative care’s “country road.” Part II details a provider framework for working with patient-families to enact the palliative choice. In doing so it becomes evident that in-hospital palliation comes only after some amount of in-hospital curative attempts—the antithesis of opting to Die in PEACE as presented in Notes from the Waiting Room. In any case, as APEOC is nowhere near as dense as …And A Time to Die, use this as a lay person’s complete guide to really understanding why end-of-life hospitalization is the way it is—and what it may become.

A Life Worth Living: A Doctor’s Reflections on Illness in a High-tech Era, Robert Martensen, M.D., FSG, 2008

Rob Martensen hits paydirt in a variety of ways. Primary among them for me is that he manifests a trait we both hold dear: reclaiming language—that is, taking back clear, common meaning of words we all use but which medicine seems to have ursurped. Expand “words” to “situations” and the value of this short, vital book grows. Example: Martensen exposes what the three phases of clinical trials are built of and can (and cannot) actually accomplish, for both medicine and citizen-patient-enrollees. Even the dire context doesn’t keep me from feeling utterly refreshed by this doctor’s recasting of situations from the interests of patient-families. While I don’t agree with every ethical position Martensen sets forth, he gets those core points across very economically. Unlike Notes from the Waiting Room, ALWL won’t explicitly guide you toward how to manifest the resolve to die peacefully—but describes, through patient snapshots, results of the various pathways available to all of us.

Natural Longevity vs Medically Induced Longevity, Jennifer Munns Burnham (Jafoo)
My work starts from the preposition that language defines experience. I find the way Jennnifer Burnham frames longevity particularly apt and compelling, for a well-framed outlook orients us toward the outcome we desire. Jafoo’s guidance booklet is a powerful tool to supplement Notes‘ Option to Die in PEACE section. BoomOp.net.

Recommended Reading | The Rest of the Best

Hospital, Julie Salamon, The Penguin Press, 2008
I’m impelled to include Hospital among The Rest of the Best, but with some reluctance. Salamon’s book is an interesting, perhaps fascinating look at some of the inner workings of one hospital, situated amidst the dense multicultural borough of Brooklyn, New York. I believe we are well served to stay in touch with our compassion, including for the men and women who comprise our treatment groups and their administrators. (The most interesting information has to do with the linkage that creates traffic jams for those admitted to the ER who subsequently need to move to a hospital bed.) My reluctance stems from a concern that we not go too far, feeling compassion for hospitals as institutions. My allegiance is and will be with patient-families, whose needs and experiences always trump the procedural interests of an institution. If you can read the non-fiction Hospital as if it were a novel and not let the story influence you into self-apology for institutional shortcomings, you may find some value in this fly-on-the-wall reportage about hospital functioning and the tribulations of doctor/administrators.

Final Rights: Reclaiming the American Way of Death, Joshua Slocum and Lisa Carlson, Upper Access, 2011
Carlson founded and Slocum directs the Funeral Consumers Alliance. This updated compendium exposes funeral industry shenanigans and offers guidance for caring for your own dead in each of the 50 US states. If you’re interested in home funerals or at least not getting caught up in over-authoritarian post-death coercion, this is a must-read.

Curtains: Adventures of an Undertaker in Training, Tom Jokinen, Da Capo Press, 2010
Pondering what to do with a loved one’s remains and how to do it are part of death’s closing continuum. I obtained Curtains assuming it to be some raucous expose. Instead I found a lush, somewhat quirky, and heartfelt exploration of death’s back end from inside the funeral business. Jokinen limits his exploration to mainstream choices (both traditional and green), although he mentions in passing newer technologies emerging as alternatives to cremation. Curtains is a provocative read. Plus, its title’s double entendre is for the ages!

The Undead: Organ Harvesting, the Ice-Water Test, Beating-Heart Cadavers—How Medicine is Blurring the Line Between Life and Death, Dick Teresi, Pantheon Books, 2012
The apparently controversial Undead examines what exactly constitutes death from the perspective, primarily, of organ harvesting for donation. Thus, Teresi merges two delicate, sacrosanct topics into one conversation. He’s not gentle about it. I’ve permeated myself since 2004 with an examination of what we really must do in order to die in peace, and I’m fairly immune to discomfort or outrage about these matters; for me an honest presentation of viewpoints is most welcome. As a contrarian I welcome other contrary opinions, usually finding value—something new to integrate into my worldview or to refine my understanding. I remain a bit unclear about Teresi’s goal with Undead, if he’s got one beyond lobbying against brain death (distinct from what I’ll lump together as heart/lung/blood-oxygen death) as the established US baseline, because I’m unsure where to go with the resulting ambiguities. I recommend Undead because we cannot escape the impact of technological dying—the likely default for the vast majority of us in today’s world, and the sooner we parse its challenging aspects the more likely our demises may be peaceful for all involved.

Shocked: Adventures in Bringing Back the Recently Dead, David Casarett, Current (Penguin), 2014
Shocked focuses on the history, practice, and possible future of resuscitation including suspended animation (currently successfully limited to just a few body parts). Since resuscitation matters  loom large related to dying in peace the topic is germane and fascinating. I’m dismayed at what’s not included in Dr. Casarett’s thinking; although he includes a summary chapter querying whether or not resuscitation ought to occur, he doesn’t explicitly favor first looking for directives against resuscitation on victims and withholding it should any be found—particularly important given the future he maps where automatic external defibrillators are as ubiquitous as fire extinguishers. Nor does this future-oriented book delve into possible advances that would instantly measure a victim’s condition to assess resuscitation’s likely value. Regardless, this book is a useful read for the curious, and because it reinforces that resuscitation advances and the people who utilize them for medical miracles remain strongly pro-resuscitation. Each of us must assess our own benefit/risk ratio regarding this important medical practice which can ruin lives which are beyond saving.