DEATH--PLANNING---books exploring medical care near the end of life

BOOKS ON LIFE-ENDING DECISIONS

Books selected and reviewed by James Park,

advocate of the right-to-die with careful safeguards.

The following books are organized in order of quality, beginning with the best.

The paragraphs in black are intended to present objective facts about each book.
The remarks in red are the evaluations and opinions of this reviewer.

This reviewer has written a whole book on making life-ending decisions:
How to Die: Safeguards for Life-Ending Decisions,
which is reviewed last.

1. Nancy Berlinger, Bruce Jennings, & Susan M. Wolf

The Hastings Center Guidelines for Decisions
on Life-Sustaining Treatment and Care Near the End of Life

Revised and Expanded Second Edition

(New York: Oxford University Press: www.oup.com, 2013)       240 pages
(ISBN: 978-0-19-997455-9; paperback)
(Library of Congress call number: R726.G84 2013)

    Revision and expansion of the 1987 book called:
Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying.

    The ending of curative medical treatments and disconnecting life-supports
is here taken as the paradigm for life-ending decisions.
This is probably because there is such a long clinical tradition
of choosing this medical method of managing dying.

    Most legal methods of choosing death are considered in this volume:
increasing pain-medication, terminal sedation, & withdrawing treatment,
including ending food and water provided by tubes.
But the authors do not favor 'physician aid-in-dying'.

    Medical decisions near the end of life should be taken with great care.
This work outlines all of the ethical processes for making treatment decisions,
paying first attention to the wishes and preferences of the patient.

    But the book is written only for health-care professionals.
Nowhere is there a suggestion that a patient might read these pages.
Various professionals will consult with one another
before they make any recommendations to the patients and/or the proxies.

    Nevertheless, everyone must die, including the professionals
who have spent their lives making life-ending decisions for others.
(59 contributors and meeting-participants are named at the beginning.)
Every person who contributed to this volume and every reader
will also become a patient at the end of his or her life.
And these health-care professionals
will be much more involved in their own medical decisions
than this book imagines for most patients.

    Advance Directives are strongly recommended for all persons.
Careful attention is given to selecting good surrogates or proxies
for making medical decisions
when the patient is not able to decide or not able to express his or her wishes.
The patient has the primary authority to make all medical decisions.
But there should always be a back-up system for making medical choices.

    Other important issues covered include:
ethical consultants and committees,
cost-containment concerns, especially for patients who cannot pay,
determining the patient's decision-making abilities,
establishing responsible proxy decision-makers,
ensuring smooth transitions between institutions,
when and how to declare death,
putting good guidelines into institutional policy, &
several common modalities of care at the end of life.

    Because this is a consensus document
it records well-established practices in terminal care.
A more forward-looking guidebook
would have projected innovations likely to emerge in the next 25 years.

    For example, instead of talking continuously about health-care options,
the next edition of this book might project
how patients could plan their own deaths.
A new terminal-care professional might emerge,
the Death-Planning Coordinator.
When the complete analysis of the patient's condition
points to death within a few weeks,
then much of this book becomes irrelevant.
The details of the plan for medical care are not as meaningful
as acknowledging that this patient is dying.
Then planning the best pathway towards death can begin.

    This book tends to be conservative about life-ending decisions
because it represents a consensus of the medical and legal establishments
that has been in operation for the two or three decades
leading up to the publication of this book.
People who follow these guidelines will always be making safe choices.

    Nevertheless, this book does belong on this bibliography
about making life-ending decisions.
Later, it will be seen as one of the first, tentative books.
Subsequent books will describe with more assurance
just how doctors and nurses cooperated in
the wise life-ending decisions of their declining patients.

    Health-care professionals and their institutions should be protected.
Otherwise, they will no longer exist to help new patients.
But the best pathway towards death should be chosen by the patient.

    This volume was constructed very carefully.
And this reviewer found it good enough to read aloud.
but other authors will create new ways of dying.

2. Norman L. Cantor

Making Medical Decisions for the Profoundly Mentally Disabled

(Cambridge, MN: MIT Press, 2005)       307 pages
(ISBN: 0-262-03331-3; hardcover)
(Library of Congress call number: KF480.C36 2004)

    A professor of law defends the rights of persons with mental limitations.
They should be regarded as full persons,
even when they cannot make their own decisions
about important matters in their lives.
Surrogate decision-makers should keep their best interests in mind
when making decisions for individuals who lack autonomous capacity.

    This reviewer suggests Medical Care Decisions Committees
as the major answer to the problems raised in this book.
These would be groups of laypersons selected from relatives and friends
who can communicate with the patient
and who will protect the best interests of the patient
possibly against the contrary wishes of any professionals
who might recommend any specific life-decisions
for the mentally disabled person (or former person).

    This book mostly considers historic cases that have been decided by courts.
And during the years under review,
the most common situation involved one surrogate deciding for the patient
who had lost the necessary capacities to make medical decisions
or who never possessed enough thinking power to decide.
(Two surrogates were common when parents decided for minor children.)

    But most of the difficult cases would have been easier to decide
if a number of people were legally empowered to decide for the patient.
Five people seems a reasonable number.
These would be famiy members and perhaps friends of the patient.
When the patient has been living in some supervised setting,
then there are caregivers who would be reasonable to include.
Some jurisdictions have special agencies
charged with protecting the interests of vulnerable patients.

    When the patient cannot choose proxies,
let the potential proxies discuss among themselves
what combination of interested persons
would make the best Medical Care Decisions Committee for this patient.
Such a self-appointed MCDC could register itself with the medical-care team.
And if there is no reason to challenge this MCDC,
it would be called upon to make all important medical decisions for the patient.
They would discuss the options with the medical providers
and perhaps vote in order to decide the best course of action.
Read more about Medical Care Decisions Committees:
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/MCDC.html.

    Chapter 2 discusses what rights the profoundly-mentally-disabled might have.
Some courts have tried to maintain that they have the same rights
as fully-compentent persons, who are obviously able to decide for themselves.
Some suggest a more limited set of rights for patients with mental limitations.
And others have wrestled with the question of how to make decisions
for patients who have now become unable to express any wishes they might have.
Some patients were never competent to make any medical decisions.
Other patients lost their capacity to make medical decisions
as the result of accidents that rendered them permanently unconscious.
In that case, did they leave any expressions of their plans for medical care?
Can we guess what they would have wanted in the present situation?
Would it be relevant to know what most people would want?
For example, 90% of people would not want to be kept 'alive' in a coma.
Would this fact be relevant for decisions that must be made for a patient
who expressed no specific values or plans about such a situation?
Does the government have a right or a duty to keep all patients 'alive'
when there is no Advance Directive to the contrary?

    Chapter 3 reviews the particular people who are usually called upon
to make medical decisions for patients who cannot decide for themselves.
When the patients are newborns or minor children,
the natural surrogate decision-makers are the parents.
Only in exceptional circumstances does the law prevent parents
from making medical decisions for their children.
When adult children do not have the capacity to decide for themselves,
frequently parents are officially authorized to make their medical decisions.

    Only in unusual situations do the laws require others to become involved.
These include medical decisions about organ-donation, sterilization,
medical experiments, & withdrawing or withholding food and water.
When the patient is an adult child who lacks the capacity to make medical choices,
the parents frequently need court approval to be the surrogate decision-makers.
And in some locations, public officials are employed
to protect the interests of mentally-limited adults.

    When mentally-limited patients are living in institutions,
those institutions usually have considerable powers
to make medical decisions for the patients under their care.

    Chapter 4 examines the possible interests of the profoundly-disabled patient.
When the patient was never a full person with wishes and values,
then the surrogate decision-makers need not attempt to guess
what religious beliefs or medical preferences that patient might have had
if he or she had developed as a normal person.
Rather, even small pleasures in existing might be taken into account.

    Will this patient ever be able to understand the purpose of a medical procedure?
For instance, would a female patient comprehend
the benefits and burdens being sterilized?
How much weight should be given to the possible interest of other family members?
When considering life-ending decisions,
should the burdens on the family be considered?

     Chapter 5 explores using patients who cannot decide for themselves
in various kinds of medical research.
Frequently, what is proposed for the profoundly-disabled individual
will have little or no benefit to that patient.
But it might have great benefit to other individuals,
including other patients with the same medical problems.

    When other people are required to do their thinking for them,
how much altruism should be ascribed to patients with severe mental limitations?
Past exploitation of patients who could not protect themselves
has led to various proposals to protect them by laws, rules, & court-review.

    A Medical Care Decisions Committee might be ideal for approving medical research.
Commissions and medical associations have sometimes
tried to define abstract principles that will help decide
which subjects may 'volunteer' for medical research.
What are the possible burdens and risks for the 'volunteer'?
What benefits might come to this particular research subject?
Would other members of the family benefit?
Would future medical patients benefit from the results?

    When a fully-competent person volunteers to be a research subject,
such qustions are explored as a part of obtaining informed consent.
Just one person's agreement is required.
But a potential research subject who cannot give informed consent
might have all relevant questions reviewed by the MCDC.
These five people together should be able to reach a wise decisions,
perhaps even better than any single person acting alone.

    Chapter 6 attempts to give a voice to profoundly disabled persons.
When making decisions about a certain medical treatment,
even if the patient cannot be expected to understand the purpose,
nevertheless some simple discussion and emotional responses might be possible.
The desiders should take the patient's 'views' into account as fully as possible,
even while making decisions that are in the best interests of the patient.

    In deciding about an abortion for a pregnant female,
the child-like wish to have a baby
can be counter-balanced by a full grasp of parental responsibilities.

    Even tho life-ending decisions were not the central focus of this book,
the underlying principles for surrogates making decisions
can be applied to decisions that must be made at the end of life.
Also, patients with mental decline were not often mentioned,
but the discussion of how to decide for never-competent individuals
would also apply to patients who lose their abilities
to make decisions near the end of life because of mental decline.

    The major difference for Alzheimer's patients
is that they usually had some years of living as capable adults
before they lost their abilities to make wise decisions about anything.
So their prior views about end-of-life issues
should be taken into account when deciding for them.

    Next, we need a book about making life-ending decisions
for patients who suffer mental decline at the end of their lives.
Here is one chapter that might get such thinking started:
Life-Ending Decisions for Alzheimer's Patients.
All adults who suffer mental deterioriation in advanced years
will have their end-of-life medical decisions made for them.
When the patient can no longer understand the problems
or comprehend the solutions being proposed,
how should medical decisions be authorized?
How shall decisions be made that will result in the patient's death?

3. Steven W. Smith

End-of-Life Decisions in Medical Care:
Principles and Policies for Regulating the Dying Process

(Cambridge, UK: Cambridge University Press: www.cambridge.org, 2012) 350 pages
(ISBN: 978-1-107-00538-9; hardcover)
(Library of Congress call number: R726.S55 2012)

This book reviews the philosophical and legal thinking
surrounding the process of making life-ending choices for patients
in the United Kingdom and the United States.
The author deals exclusively with those life-ending decisions
that this reviewer calls "voluntary death" and "merciful death".
These reasonable choices at the end of life
are usually initiated by the patient and/or the family.

In contrast, life-ending decisions initiated by doctors are hardly mentioned.

The book is based on written materials published previously
rather than any original research
into how particular patients have actually met death.

The latest developments in law and practice are included.
But no original or creative insights appear.
Readers deeply interested in right-to-die issues
will be the main readers of this book.

An Internet search of the title will disclose the specific contents.

{last} James Leonard Park

How to Die:
Safeguards for Life-Ending Decisions

(Minneapolis, MN: Existential Books: www.existentialbooks.com, projected for 2018)       6xx pages
(ISBN:                                        )
(Library of Congress call number:             )

    Rather than being another suicide-manual,
as might be suggested by the provocative title,
this book is strongly opposed to irrational suicide.
Instead of endorsing the right-to-die
as an implication of the right-to-choose-suicide,
this careful book fully embraces modern medicine
as doctors, their patients, and/or the patient's proxies
attempt to make wise, end-of-life medical choices.

    All of the readers of this book will die,
no matter when they were born.
But all who were born in the 20th century
and who were still alive in the 21st century
will probably die while under some kind of medical care.
And in more than half of these deaths
there will be a meaningful element of choice.

    As the practice of modern medicine evolves,
there will be ever greater recognition
of significant choices being made at the end of life.
Life-ending decisions that used to be downplayed and obscured
will come more into the open.
And with this greater honesty about how our lives really end,
there will be an emerging need for better safeguards
for the process of making decisions that terminate human lives.

    The core of this book presents 26 careful safeguards,
which can be applied selectively to all life-ending decisions.
Fulfilling these safeguards will involve several other people
beyond the patient and his or her doctors.
Depending on the specifics of each life-coming-to-an-end,
some safeguards will be more relevant than others.
And some will become completely impossible.
If, for instance, the patient is already in a coma,
the patient can no longer be asked about medical decisions.

    Fulfilling the most relevant safeguards
will be the most practical and convincing way to separate
irrational suicide from voluntary death
and mercy-killing from merciful death.

    Consistent and faithful use of the most meaningful safeguards
will enable the right-to-die movement to emerge from the shadows
of its early attempts to empower people to choose a reasonable death.
Even before right-to-die laws are enacted to embody such safeguards,
consulting the recommended people and getting their written approval
will almost guarantee that everyone who helps other people
to choose a timely death will not face prosecution
wherever a jury of their peers would decide their guilt or innocence.
Common sense will prevail when the fulfilled safeguards
point toward a chosen death as the best solution.

    This volume concludes with 7 bibliographies (63 pages),
reviewing dozens of other books on themes related to the right-to-die.

    Best of all, the compete text of How to Die:
Safeguards for Life-Ending Decisions
is available free-of-charge on the Internet:
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/HTD.html.
And even after the printed and bound book is finally ready,
the revised text will remain an Internet Book.

    And for your convenience, the table of contents (with links)
also appears below.

A Facebook Group is discussing this book
and offering advice for revisions:

https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/ED-HTD.html .

This same review also appears in two other bibliographies:
Safeguards for Life-Ending Decisions---the Best Books.
Books Supporting the Right-to-Die.

Created August 1, 2013 ; Revised 8-15-2013; 11-19-2013; 11-24-2013;
2-18-2014; 3-6-2015; 3-17-2015; 3-25-2015; 4-2-2015; 10-25-2016; 3-5-2017; 3-1-2018;

How to Die:
Safeguards for Life-Ending Decisions

by James Leonard Park

TABLE OF CONTENTS

See related bibliographies:

Best Books on Voluntary Death

Best Books on Preparing for Death

Books on Terminal Care

Books on Hospice Care

Books on Helping Patients to Die

Books Supporting the Right-to-Die

Books Opposing the Right-to-Die

Go to the Right-to-Die Portal.

Go to the Book Review Index
to discover 350 other reviews organized into 60 bibliographies.

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Go to the Medical Ethics index page.

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