ADVANCE DIRECTIVES (Medical Care)---books reviewed by James Park

BOOKS ON

ADVANCE DIRECTIVES

FOR MEDICAL CARE

Selected and reviewed by James Park.
Listed in order of quality, beginning with the best.
The red comments are the evaluative opinions of this reviewer.

1. Norman L. Cantor

Advance Directives and the Pursuit of Death with Dignity

(Bloomington, IN: Indiana University Press, 1993) 209 pages

An excellent book on Advance Directives from a legal point of view.
The author is a professor of law, who had a hand in drafting
New Jersey's model legislation for Advance Directives,
which might be the most comprehensive and liberal in the United States.
The book includes criticisms of the limitations
of 'living will' laws in several states and suggests improvements.
Dr. Cantor includes his own Advance Directive,
which focuses mainly on the loss of dignity as the test for deciding
when to withdraw or withhold further life-sustaining measures.
The book also presents some imaginary cases
in which proxies might consider overriding an Advance Directive.

Some other major themes:

(1) autonomy in medical decision-making
for the competent and the incompetent;

(2) proxy's powers to interpret and enforce Advance Directives;

(3) possible problems encountered in making end-of-life decisions
and how to avoid them, for instance,
what to do if a doctor or hospital has principles or policies
that run counter to the requests in an Advance Directive;

(4) deciding for patients who have become mentally confused
and have forgotten their reasons for making their Advance Directives
and now 'decide' that they want to live under diminished circumstances.

This book raises and answers a number of legal questions that
persons writing comprehensive Advance Directives should consider.

2. Allen E. Buchanan & Dan W. Brock

Deciding for Others: The Ethics of Surrogate Decision Making

(Cambridge, UK: Cambridge University Press, 1989) 422 pages

This is perhaps the best and most comprehensive book on medical
decision-making for pre-persons, full persons, & former persons,
who might not be capable of deciding for themselves.
It is especially relevant for the proxy provisions of any Advance Directive.

The major themes:

(1) determining competence;

(2) patient-centered principles for deciding;

(3) Advance Directives and continuity of personhood;

(4) considering the impact on society;

(5) deciding for infants and minors;

(6) deciding for the elderly;

(7) proxies for people with behavioral problems.

This book is recommended for everyone making decisions for others.

3. Robert S. Olick

Taking Advance Directives Seriously:
Prospective Autonomy and Decisions near the End of Life

(Washington, DC: Georgetown UP, 2001) 228 pages
(ISBN: 0-87840-868-1; hardcover)
(Library of Congress call number: KF3827.E87O43 2001)
(Medical call number: W85.5O46t 2001)

A well-reasoned plea for honoring Advance Directives for Medical Care.
The author recognizes that ADs are often ignored by doctors and hospitals,
because their own standards of care are more familiar to them.
But better enforcement of ADs should allow all of us
to die in the ways that seem best to us.

Here are some of the major issues discussed:

1. What to do with a patient in a coma?

2. We honor other decisions made in advance, such as estate wills.

3. Core values or settled values should be embodied in an Advance Directive.

4. What if the maker of an Advance Directive becomes a new person or a former person?

5. What about situations not covered in the Advance Directive?

6. What if advances in medical science and medical treatment
make an old decision obsolete?
For example, what if a disease specifically named in an Advance Directive
is no longer always fatal?

7. What happens when the proxy and the Advance Directive seem to differ?

As can be seen from these issues and questions,
this book tends to be rather philosophical and technical.
But it does raise many valid issues and worries
that should be considered in creating
a comprehensive Advance Directive for Medical Care.

4. Jeanne Fitzpatrick, MD & Eileen M. Fitzpatrick, JD

A Better Way of Dying:
How to Make the Best Choices at the End of Life

(New York: Penguin Books: www.penguin.com, 2010) 222 pages
(ISBN: 978-0-14-311675-2; paperback)
(Library of Congress call number: R726.2.F58 2012)
(Medical call number: W85.5F559b 2012)

Two sisters—a physician and a lawyer—have created
what they hope will be a simple form of Advance Directive.
Their main emphasis is taking advantage of "exit events",
when it would be entirely appropriate to end all curative treatments.
They call their two-page Advance Directive
a "Contract for Compassionate Care".

This book is easy for all readers to understand.
And if the advice is followed, it should improve the process of dying.
The patient takes charge of all end-of-life decisions.
And frequently such decisions must be made in advance,
since the patient might not be able physically or mentally
to make the needed end-of-life decisions.
Having a Health Care Decision Maker solves this problem.

One oddity of this book is that it does not extend
life-ending decisions to disconnecting life-support systems.
Many of the patients described in this book who died too late
would have suffered less if they had given up food and water.

5. Nancy M.P. King, JD

Making Sense of Advance Directives

(Washington, DC: Georgetown UP, 1996—Revised Edition) 286 pages

Nancy King is a professor in a medical school who has a law degree.
This book deals with the legal, ethical, & philosophical dimensions
of making Advance Directives for medical care: refusing treatment,
deciding for others, problems of interpretation and implementation.
This book is probably too technical
to be helpful for the average person creating an Advance Directive,
but those who want to know the background issues should consult it.

6. John David Doukas, MD & William Reichel, MD

Planning for Uncertainty:
A Guide to Living Wills and other Advance Directives for Health Care

(Baltimore, MD: Johns Hopkins, UP, 1993) 147 pages
(ISBN: 0-8018-4670-6; hardcover)
(ISBN: 0-8018-4671-4; paperback)
(Library of Congress call number: KF3827.E87D68 1993)

An elementary presentation—using question-and-answer format—
of the basic facts about Advance Directives.
Generic forms are included at the end of this volume.
This book is probably too simple for most readers.
But it could be a place to begin
for someone who knows nothing about 'living wills', etc.

A revised and expanded edition has been published.

7. Alan D. Lieberson, MD, JD

Advance Medical Directives

(Deerfield, IL: Clark, Boardman, Callaghan, 1992) 879 pages
(Eagan, MN: West: cumulative supplement August 2004) 1964 pages

This physician and lawyer has created a comprehensive summary
of almost 3,000 pages, dealing with every aspect of Advance Directives.
It will stand as the standard work on the subject for many years.
For several years following publication, the author created a supplement
updating the book as new cases are decided and new state laws created.
He has reviewed all the court cases having to do with the right-to-die,
especially those involving proxy decision-making and 'living wills'.
The cumulative supplement has now grown to about twice the size of the original book.
And in some senses it is a clipping service for articles published elsewhere.
If and when a new edition of Advance Medical Directives is published,
much of this new material will have to be condensed
to make the book a reasonable size.

Some of the most important themes:

(1) what state laws say;

(2) needed changes;

(3) problems honoring Advance Directives;

(4) legal bases for Advance Directives;

(5) Do Not Resuscitate orders;

(6) durable power of attorney for health care;

(7) the right-to-die;

(8) organ donation;

(9) physician aid-in-dying.

A revised edition has been published.

8. Hans-Martin Sass, Robert M. Veatch, & Rohito Kimura, editors

Advance Directives and Surrogate Decision making in Health Care:
United States, Germany, and Japan

(Baltimore, MD: Johns Hopkins University Press: www.press.jhu.edu, 1998) 311 pages
(ISBN: 0-8018-5831-3; hardcover)
(Library of Congress call number: R726.2.A38 1998)
(Medical call number: W85.5A245 1998)

This book examines many aspects of advance decision-making
for people who might later become incapable of making medical decisions.
It takes a cross-cultural look at actual practices
as well as the laws in the USA, Germany, & Japan.
Each contributor writes about the situation in his own country.

The most important chapter is by Alan Meisel, JD:
Chapter 2: "Legal Issues in Decision Making for Incompetent Patients:
Advance Directives and Surrogate Decision Making".
When state laws have attempted to limit the scope of Advance Directives,
the courts have usually allowed the written AD to prevail.
Legal incompetence (losing all adult rights) is usually not required
for an Advance Directive to become effective.
Normally the doctor merely turns to the next of kin
when the patient seems no longer able to make wise medical decisions.
Some states have attempted to set a higher standard of proof
for the decision to withhold or withdraw food and water,
but courts have usually ruled that these are forms of medical treatment,
which can therefore be decided in the same ways as any other treatments.
We always have the right to refuse medical treatment.
And we always have the right to give up food and water.
The fact that nutrition and hydration are provided by tubes makes no difference.

    Meisel notes that 'check-list' Advance Directives
do not easily take into account specific situations requiring decisions.
For example, many people check the box stating
that they never want to be put on a ventilator.
But all reasonable people would accept temporary breathing assistance
if it will restore them to their normal, healthy lives.
'Check-list' ADs might seem attractive to doctors and patients
because they look like standard medical forms.
But personal statements and discussions
are more helpful for actual medical decision-making.
Most ADs are expressed in brief and general language,
which does not easily translate into medical decisions at the bedside.
Therefore, it is very important to appoint appropriate proxies.
When there are no surrogates named,
the law says that doctor should ask the 'next of kin'.
But the law cannot tell the difference between
kin who are close and kin who are estranged.
Therefore, we should name the person or persons
we find most appropriate to make our medical decisions
when we can no longer make wise choices.
Because proxies are usually involved in our lives,
they almost always have something to lose or gain by our deaths.
Such conflicts of interest cannot be entirely avoided.
But we can be aware of them and seek to minimize their effect.

    The status of Advance Directives in Germany
is a few decades behind their status in the United States.
Few doctors have been asked to deal with them.
They are not yet legal documents.
And most of the suggested forms merely refuse treatments.

    The situation in Japan is similar:
Paternalism from the medical profession prevails.
And sometimes the patient is not even told that he or she is dying.
This is intended to spare the patient the additional suffering of facing death.
It is just too distressing to the patient and family to talk about dying.
When no one acknowledges that this patient is dying,
Advance Directives for Medical Care are irrelevant.
Everything is going to be decided by the doctor in any case.
Also, writing down one's wishes
might be taken as a sign of distrust of one's relatives.
It is more polite to communicate verbally and interpersonally.
The only medical discussions are about treatments,
seldom about preparing for death.
In Japan ADs are only for people already dying:
"If you get a terminal disease, do you want to write an advance directive?"
And, as in Germany, ADs do not yet have the force of law.
And even fewer Japanese create 'living wills' than Americans.

    Because of the Japanese denial of death,
there is also very little organ-transplantation
because there is no way to decide in advance to donate.
Brain-death has only recently been accepted as a definition of death.

    This book concludes with about 50 pages
devoted to several kinds of Advance Directives,
from the USA, Germany, & Japan.
These range from short generic statements,
to check-lists of treatments and values,
to narrative forms that ask what we would want
if we were in specific situations.

    This book is probably the first to discuss
Advance Directives across different cultures.
The English-speaking world has led the way.
And we can see how far the USA has come
when we look at the situations in other countries.

9. Carol Krohm, MD & Scott Summers

Advance Health Care Directives:
A Handbook for Professionals

(Chicago, IL: ABA Publishing: www.ababooks.org, 2002)       351 pages
(ISBN: 1-59031-008-X; paperback)
(Library of Congress call number: R726.2.S85 2001)

    A husband-and-wife team offer their perspectives on Advance Directives.
This book is primarily intended for lawyers and doctors.
And it was published by the American Bar Association.
Even tho the top billing goes to the physician-wife,
this reviewer suspects that it was mainly written by the lawyer-husband.
It presents the basic well-known facts about Advance Directives
and includes discussion of the many technical problems
that can arise in writing any Advance Directive.
However, the authors missed their opportunity
to suggest some creative wording that would avoid such problems.

    Some of the major themes include:
competence and incompetence;
the careful selection of proxies or agents;
opportunities lawyers and doctors have
to encourage clients to create Advance Directives;
the positions of several religious groups on Advance Directives;
& the likely electronic future for Advance Directives.

    A CD-ROM is included in the back of this volume,
which has all the suggested state forms for Advance Directives.

10. Linda Norlander & Kerstin McSteen

Choices at the End of Life:
Finding Out What Your Parents Want before It's Too Late

(Minneapolis, MN: Fairview Press: www.fairviewpress.org, 2001)       165 pages
(ISBN: 1-57749-103-3; paperback)
(Library of Congress call number: R726.8.N67 2001)

    The two authors are both nurses
who have had extensive experience in caring for the dying.
This book begins with stories illustrating the need for advance planning.
Most American do not have Advance Directives,
even tho most say they would like to have such documents.
This book wants to help readers get beyond the wishing stage
and actually begin the process of discussing and writing
that will ultimately result in legal Advance Directives for Medical Care.

    As suggested in the title,
this book was written for adult children of aging parents.
But the principles could be used for creating Advance Directives
for persons of all ages.
It might even have been good for the adult children
to create their own Advance Directives along with their parents.
This would have shown that Advance Directives are for everyone
—not just people known to be nearing the end of their lives.

    The authors suggest a "kitchen table discussion"
involving family (near and far), friends,
a member of the clergy, the doctor, and even the lawyer.
Some of these people might be included
by conference call or written communication.

    One chapter explains the major medical decisions
that might be necessary at the end of life.
Medical technology developed to save lives
might not be appropriate when the patient is dying.

    The values and goals of the patient need to be articulated.
How able is the patient to make meaningful medical decisions?
Who are the best proxies for the patient?
The doctor needs to explain the condition of the patient
and the likely course of events under various medical options.
When should hospice care be considered?

    Even when there is an Advance Directive,
it is sometimes difficult to get the health-care personnel
and institutions to cooperate.
They often have their standard ways of handling such cases.
It might be necessary to change care-givers
or even to take legal action to enforce the medical directive.

    In summary, this is another book about Advance Directives:
It covers all the basic information, but it does not go very deep.
For example, the authors missed their opportunity
to suggest specific language
that might be included in an Advance Directive
to achieve the desired results.

    But if we need more encouragement to begin the process,
this book contains plenty of reasons and examples
for starting the "kitchen table discussion"
that might ultimately lead to a written Advance Directive.

11. Kenneth A. Bartholomew, MD

Doctor, Please Close the Door:
A book on living wills, power of attorney,
terminal care, and the right to die with dignity

(Plantation, FL: Distinctive Publishing Corp., 1994) 102 pages
(Out of print: Borrow from library or buy a used copy)

The medical director of a nursing home tells the stories of several
patients who were kept alive after their minds were gone
—because they had no Advance Directives
and others were reluctant to stop feeding and "watering" them.
He recommends documents that refuse water
when we can no longer feed ourselves.
Death by dehydration is the preferred way to die.
This book makes a strong case for having a good 'living will'
or a durable power of attorney for health care.

12. Chris Hackler, Ray Moseley, & Dorothy E. Vawter, eds.

Advance Directives in Medicine

(New York: Praeger Publishers, 1989)

Papers presented at a conference in May 1985 in Little Rock, Arkansas.
18 contributors discuss many dimensions of the subject.
Now mainly of historical interest
—for people who have read the most recent books.

[last.] James Leonard Park

Your Last Year:
Creating Your Own Advance Directive for Medical Care

(Minneapolis, MN: Existential Books, 2006) 248 pages
(ISBN: 978-0-89231-800-1)
(Library of Congress call number: KF3827.E87.P37 2006)

    This book is built around 24 open-ended Questions.
Here is a 4-page comprehensive outline: Your Last Year.
This table of contents has links to many pages of this book.
If you create a comprehensive Advance Directive,
you will answer each of the Questions in whatever ways seem right to you.
The author includes his own 24 Answers,
which takes up the last 50 pages of the book.
He also includes a 4-page summary of his Answers.

    So far, this is the only book known to this reviewer
that provides detailed help in addressing all of the issues
that must be considered in creating
a comprehensive Advance Directive for Medical Care.
Whenever other such books appear,
they will also be included in this bibliography.

    This book was written for the consumers of health care.
All medical and legal problems with Advance Directives
are explained in terms that anyone can understand.
This is probably the only book you need
to create a comprehensive Advance Directive for Medical Care.
And it divides this sometimes-daunting task into 24 bite-size pieces.

Suggestions for additional books to include
on this Advance Directive Bibliography
should be sent to James Park by e-mail:
PARKx032@umn.edu

Go to the Portal for Advance Directives for Medical Care
which is a comprehensive listing of Internet resources for ADs.

Return to MEDICAL ETHICS page.

If you would like to see a description of a workshop on 'living wills', click:
Planning for Death: Creating Our Own Advance Directives for Medical Care.

If you would like to see the Questions that should be answered
in a comprehensive Advance Directive, click:
Questions for Your Advance Directive .

If you would like to read James Park's Answers to these Questions,
read his Advance Directive for Medical Care:
James Park's Advance Directive for Medical Care .

Go to the beginning of this website
James Leonard Park—Free Library