Terminal Medical Care
from the Consumer's Point of View

Copyright © 2018 by James Leonard Park

<>Books reviewed by James Park,
<>advocate of the right-to-die with careful safeguards.<>
<>The comments in red are the evaluations of this reviewer.
<>The books are organized by quality, beginning with the best.

    1.  Katy Butler 

    Knocking on Heaven's Door:
    The Path to a Better Way of Death

    (New York: Scribner/Simon & Schuster: www.SimonandSchuster.com, 2013)       322 pages
    (ISBN: 978-1-4516-4197-4; hardcover)
    (Library of Congress call number: not given in book)

        This moving memoir of the deaths of two parents
    illustrates many problems of the way we die.
    Katy Butler's father suffered a slow decline into death,
    unnecessarily drawn out by the fact that no one took the initiative
    to end medical treatments and life-supports
    which in his case was mainly an implanted pacemaker.
    By the time this became a serious option,
    the patient himself had declined beyond the point
    of making his own medical decisions.

        Rather than turning off a pacemaker
    when the patient has come to the end of his or her meaningful life,
    some doctors are willing to let the batteries run low,
    which will result in a random later death
    when this form of life-support finally gives out
    because there is no more electricity to keep it going.
    Is such thinking mainly about the doctor's self-concept or reputation
    rather than what would be best for the patient?

        Katy Butler's mother took a different pathway towards death:
    After exploring life-extending options, she decided not to take them.
    Her dying was short and merciful.

        Family dynamics will often complicate end-of-life decisions.
    And this family was no exception.
    Reading the details of one family's problems
    might help us to do better planning
    in order to avoid similar problems ourselves.

    <>    Because Katy Butler was already a professional author,
    she knew how to get this book published and well-known.
    She has continued to campaign for consumer-control of health-care.

        The author was not an expert on any end-of-life issues
    when she went thru the traumas recounted in this book,
    but after her parents' deaths, she did considerable research.

        And as a result of the success of this book,
    she is frequently called upon
    to speak for the movement to improve the process of dying.

        The title was poorly chosen (probably by the publisher),
    since none of the people involved believed in anything after death.
    There are no attempts to get into heaven.
    And the author's father certainly did nothing to hasten his death.
    A better title might have been: Too Much Medical Care:
    Can We Find Better Pathways Towards Death?

        Many readers will experience similar problems
    if they do not take charge of the dying process.
    It is helpful to know how others have suffered on the way to death.
    These can be cautionary tales, helping us to avoid similar pitfalls.

        This book is written well enough to be read aloud,
    which is what I did, while my life-partner did the dishes.
    She also found it a very meaningful book.
    And it led to discussions of deaths we have known.

    2.  Bart Windrum

    Notes from the Waiting Room: 
    Managing a Loved One's End-of-Life Hospitalization 

    (Boulder, CO: Axiom Action: www.AxiomAction.com, 2008)       336 pages 
    (ISBN: 978-0-9801090-0-9; paperback)
    (Library of Congress call number: R726.8.W56 2008)

    The under-achieving title might give the (false) impression
    that this is a book scribbled in the hospital lobby,
    recounting the unfortunate events that befell a dying relative.
    But no! 
    This is a well-researched and well-written guidebook
    for getting ready to manage dying in a hospital.
    It did grow out of the author's experiences
    with the deaths of both of his parents.
    And some details are shared about these ill-managed deaths.
    But most of the pages are devoted to organized discussion
    of the many issues that confront anyone who must die.

        The chapters:
    1. Being an effective proxy decision-maker for your dying relative.
    2. Creating the necessary paper documents to achieve a good death.
    3. Improving communication among all players
    professional and lay.
    4. Consumers taking control
    of the hospital processes to prevent mistakes.
    5. Planning for what is going to happen next and getting support.
    6. Anticipating crises—and possibly changing providers.
    7. Do Not Resuscitate and life-supports
    advance plans, doctor's orders, & exceptions.
    8. Signs of impending death
    and dealing with the body.
    9. Radical alternatives to standard dying-in-a-hospital.

        As the author himself discovered, most laypersons
    have little idea of what dying in a modern hospital involves.
    But more than half of us will die in hospitals.
    Thus, this guidebook should be read some years in advance
    by everyone who knows that he or she will be called upon
    to make medical decisions at the end of someone's life.
    (If no one else, that "someone" will be the reader.)

       This book gives the impression
    that most hospital deaths are poorly handled.

    Perhaps someone will do research
    by asking relatives at least a year later

    what they thought in retrospect
    about a dying-process they observed.

    Perhaps there was no way to postpone that death.
    But what could have made the process of dying
    easier for everyone involved?

        Consumers of death-bed services
    all future patients and those who will be at the bedside
    should read this book to get ready for the end-of-life shocks.

       But providers should also read this book.
    Doctors, nurses, hospital administrators, etc.

    should take a professional interest in improving the process of dying.
    (All such health-care workers will also be patients later.)
    Most of the unfortunate shocks of dying-in-a-hospital can be avoided.
    Everyone who wants to improve terminal medical care
    could read this book as a catalog of errors.
    Each reader who works in terminal care
    will be able to find at least one thing to improve this week
    so that the tragedies described in this book
    do not happen to patients and their families
    who are currently receiving terminal medical care.

    One of the possible Power Documents missing from Chapter 2

    (which has emerged since this book was published)
    is the POLSTPhysician's Order for Life-Sustaining Treatment.
    In light of the known medical facts, the doctor and the patient
    create a document specifying which end-of-life treatments
    will be provided and which will not.
    Sometimes called Medical Order for Life-Sustaining Treatments (MOLST),
    these written statements are more comprehensive than
    Do-Not-Resuscitate orders (DNR):
    When should the patient be hospitalized?

    When should life-supports, including tubes and drugs, be used?

        One provision of a comprehensive Advance Directive for Medical Care
    might avoid much of the stress and trauma of dying in a hospital:
    The One-Month-Less Club is for patients who decide in advance
    to skip the last month of standard terminal care
    and go directly into hospice care.
    With careful preparations, we can even die at home if that seems best. 
    A timely death (not too soon, not too late)
    might be better than standard dying.

    Of the deaths you have observed,
    which were meaninglessly prolonged by futile treatments?

        Dying in a hospital is going to cost about $5,000 per day,
    especially if we receive life-support in the Intensive Care Unit (ICU).
    Bills from doctors not employed by the hospital will be extra.
    If dying will take ten days, this amounts to $50,000.
    Or if dying is prolonged to two weeks, the total will be about $70,000.
    Many terminal hospitalizations last three weeks, costing over $100,000.
    Hospice care is only a few hundred dollars per day.
    It should not matter to us who actually pays the bills
    —the taxpayers thru Medicare and/or Medicaid,
    a tax-supported hospital, some private health-insurance,
    or our personal estates.

    shortening the process of dying
    is the most direct way to save money.
    And at these prices, we should be living like kings.
    How would we like to organize our dying
    so that we achieve the greatest meaning for the lowest cost?

        We might plan to die in a right-to-die hospice.
    Such a hospice program would openly embrace
    all legal end-of-life choices.

        The publisher's website (link at the beginning)
    gives the actual titles of the chapters and other contents.
    A better title might have been:
    Managing End-of-Life Hospitalization.

    3.  Sharon R. Kaufman

    And a Time to Die:
    How American Hospitals Shape the End of Life
    (New York: Scribner/Simon & Schuster: www.SimonandSchuster.com, 2005)       400 pages
    (ISBN: 0-7432-6476-2; hard cover)
    (Library of Congress call number: R726.8.K385 2005)
    (Medical call number: BF789.D4K21a 2005)

        A medical anthropologist recounts her experience of watching
    every aspect of dying as it takes place in the modern hospital.

        The stories of the last days of several actual patients
    forms the back-bone of this book.
    How was each death handled by the patient, the family,
    the nurses, the doctors, and others who became involved?

        The overwhelming impression left with the reader
    is that hospital deaths are handled very poorly
    Each story shows how this process of dying
    could have been improved. 

        Usually someone was not willing
    to acknowledge that death was coming.
    Either the patient, the family, or the doctors were in denial.
    They wanted to try yet one more treatment,
    even if the chances of success were remote. 

        In most cases, there was no written plan for this dying-process. 
    Everyone involved was just muddling thru
    ---even those who had attended several deaths
    as a regular part of their medical practice. 

        The patients had no written Advance Directives for Medical Care.
    The doctors had no written
    Physician Orders for Life-Sustaining Treatment.
    The hospitals were organized only for treating disease and injury,
    not for easing the inevitable passage of all patients to their deaths. 

        Chapter 8 deals with a little-known patient-population:
    the life-support ward.
    This is a unit of the hospital system that cares for patients
    who are completely dependent on some form of life-support:
    tube-feeding, ventilator, etc. 
    They are all chronic patients, rather than acute patients.
    And their time in the life-support ward is measured in years
    rather than days, weeks, or months. 

        Many have severe limitations to their mental capacities.
    Some would be described as comatose.
    Others are definitely in Persistent Vegetative State (PVS). 

        Most will stay in the life-support ward for the rest of their lives.
    Of these patients in the life-support ward,
    about zero had any written end-of-life plans.
    Only very rarely does anyone decide to turn off the machines
    and allow the patient to die.
    The default 'choice' is simply to continue all forms of life-support.

        This ward would be an excellent place for a Medical Futility Monitor
    to evaluate the reasons for continuing such medical care.

    4.  Helen Stanton Chapple

    No Place for Dying:
    Hospitals and the Ideology of Rescue

    (Walnut Creek, CA: Left Coast Press: www.LCoastPress.com, 2010)       324 pages  
    (ISBN: 978-1-59874-403-3; paperback)
    (ISBN: 978-1-59874-402-6; hard cover)
    (eISBN: 978-1-59874-703-4; electronic)
    (Library of Congress call number: R726.8.G4677 2010)
    (Medical call number: WB310C467n 2010)

        The medical care industry has its own priorities for patient care.
    And often these serve the interests of employees
    who make their living from providing medical services
    rather than the interests of the patients who receive care.

        Acute-care hospitals are supposed to rescue patients from death.
    Everything is designed to stave-off death,
    to achieve at least one more hour of 'life' for this patient.
    Only when all efforts fail is the patient declared dead.

        A surprising number of 'medical' decisions
    are actually made by considering costs and hospital politics.
    Will the doctors be pleased by the decisions made in this hospital?
    If not, they can usually take their patients elsewhere.

        The author makes an extremely convincing case
    that the modern hospital has no place for dying.
    "The only thing we do here is cure the patients."
    But, of course, many patients do die in hospitals.
    When they are declared "DNR", they might be sent to back wards,
    where they will be supported with comfort care.
    But this is no longer considered the real work of the hospital.

        This book is mainly about the need for better patient care
    ---not any examples of such care being provided.
    Because the last page of each medical record will read: DEATH,
    there should be some better preparation for patients and families
    whose hospital experience will end with the death of the patient.

        Should we create for each patient a document called
    "Pathway towards Death" or "End-of-Life Medical Orders" (ELMO)?
    It is known with absolute certainty that each patient will eventually die.
    So planning the best possible pathway will never be wasted effort.
    If important choices are made in advance,
    the usually confusions and conflicts surrounding death will diminish.
    And we might make a meaningful place for dying
    within modern medical care for all patients who die---that is everyone.

Created March 26, 2014; Revised 4-1-2014; 4-2-2014; 4-3-2014; 4-7-2014;
5-7-2014; 8-21-2014; 10-21-2014;
1-3-2015; 1-20-2015; 4-22-2015; 6-28-2015; 3-19-2018; 

Some related bibliographies

Best Books on Terminal Care (from the Doctor's Point of View)

Advance Directives for Medical Care—The Best Books

Books on Medical Futility

Preparing for Death

Books on Hospice Care

Books on Life-Ending Decisions

Safeguards for Life-Ending Decisions—Best Books

Medical Methods of Managing Dying

Books on Helping Patients to Die

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