Managing Death [Hardcover]

James M Hoefler (Author)

Book Description

Publication Date: August 14, 1997

Many Americans, before they die, will go through a stage where they are unable to make competent decisions about their own life-sustaining medical treatment. More and more, family members and care givers are facing these difficult decisions in their stead, engulfed in questions about personal wishes, medical ethics, state and federal law, and quality of life.Drawing on provocative case studies, personal interviews, and detailed research, James Hoefler examines the medical, legal, ethical, and clinical aspects of such right-to-die issues. Beginning with the legal struggle of a woman whose son existed in a persistent vegetative state (PVS) for seventeen years, the author moves into a broader look at consensus among professional organizations, from the AMA to the President’s Commission to the National Center for State Courts; beliefs of mainstream religious groups; public opinion; issues surrounding end-stage Alzheimer’s and other organic brain disorders that can slowly lead to PVS; and the role of artificial nutrition and hydration in these cases.Hoefler concludes with recommendations on how to improve the quality of right-to-die decisionmaking. An absorbing read with a minimum of technical jargon, this book is a valuable guide to care givers, public policy students, medical ethicists, family members, and anyone facing questions about an individual’s right to die.

Editorial Reviews

From The New England Journal of Medicine

Advances in medical technology, such as mechanical ventilation and renal dialysis, have increased the ability of physicians to prolong the life of patients who formerly would have died. Many patients greatly benefit from these developments, but as disease processes increasingly can be halted or reversed, the question whether life-prolonging medical intervention is always in the patient's best interest arises with increasing frequency.

Curing diseases and preventing death have traditionally been the main goals of modern health care, and doctors have only recently become aware that their responsibilities change beyond the stage at which death appears to be inevitable. In those situations, providing relief from pointless suffering while accepting the imminence of death can be another important goal of medicine. It seems, however, that clinical practice with respect to the end of life does not always reflect this awareness; doing everything to preserve life is still the "default" action in many cases.

In his book Managing Death, James M. Hoefler discusses "the medical, legal, ethical, and clinical issues associated with end-of-life decision making on behalf of those who have become irreversibly incompetent before an inevitable (if not imminent) death." After comprehensively reviewing the opinions of authoritative medical and ethical groups, Hoefler concludes that there is a broad-based consensus about which principles should guide decision making when death approaches. One of these principles, which are a thread running through the book, is the patient's right to refuse treatment. When patients are irreversibly incompetent, surrogates should make decisions based on what they think the patients would have wanted, or else on what they feel would be in the patients' best interest.

Managing Death deals in detail with the question of continuing or forgoing life-sustaining treatment for irreversibly incompetent adult patients, but several other important issues concerning decision making near the end of life are less extensively discussed. The illustrative case of a patient who has been in a persistent vegetative state for 17 years represents only a small group of patients who become incompetent unexpectedly and live for a long time in a hopeless condition. By focusing on such patients and on those with end-stage dementia, Hoefler sidesteps the problem of assessing the competence of patients in less obvious conditions. The option of openly discussing end-of-life matters with patients and their families at an early stage in anticipation of a possible period of incompetency is a tactic that might contribute to the quality of the decision making, but it is only briefly touched on in the final chapter. Moreover, issues in medical decision making concerning the end of life, like palliative care with opioids that may hasten death or the intentional administration of life-shortening drugs, are hardly discussed.

Nevertheless, Managing Death makes a valuable contribution to the debate on medical practices and responsibilities at the end of life. Hoefler's plea for physicians and others involved to be more aware of the option of "providing comfort care only" as an alternative to "doing everything to preserve life" has wide appeal, and readers from many different countries with varying judicial and cultural traditions may link up with this book. In the Netherlands, many doctors also feel that the estimated benefits and burdens for the patient should guide decisions either to continue or to forgo treatment. Dutch nursing home physicians recently issued guidelines in which they distinguished among treatment aimed at cure, palliative treatment intended to relieve suffering but not explicitly aimed at extending life, and comfort care, which is aimed at relieving suffering with the extension of life considered an undesirable effect.

The publishers of Managing Death claim it is "the first guide for patients, family members, and care providers on forgoing treatment at the end of life." The consensus principles described, however, mainly concern the range of medical options available when death approaches. Guidelines on how to act in specific circumstances are not given. In the final chapter, Hoefler gives a number of useful suggestions on how to improve the conditions under which decision making might take place.

Managing Death is very well written and easy to read for medical professionals as well as nonprofessionals. It is a timely book, since the issues discussed by Hoefler will probably become even more important in the next decades.

Reviewed by Johanna H. Groenewoud, M.D.^M
Copyright © 1998 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.

About the Author

James M. Hoefler is associate professor of political science and coordinator of the policy studies program at Dickinson College. He is the coauthor with Brian Kamoie of Deathright: Culture, Medicine, Politics, and the Right to Die (WestviewPress 1994) and is the coauthor with A. Lee Fritschler of Smoking and Politics: Policy Making and the Federal Bureaucracy (1996).

Product Details

• Hardcover: 224 pages
• Publisher: Basic Books; 1St Edition edition (August 14, 1997)
• Language: English
• ISBN-10: 0813328160
• ISBN-13: 978-0813328164
• Product Dimensions: 9.1 x 6.1 x 0.9 inches
• Shipping Weight: 15.2 ounces
• Average Customer Review: 4.0 out of 5 stars  See all reviews (1 customer review)
• Amazon Best Sellers Rank: #1,668,495 in Books (See Top 100 in Books)
  • #38 in Books > Medical Books > Medicine > Euthanasia

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Customer Reviews

Most Helpful Customer Reviews

4.0 out of 5 stars HOW TO IMPROVE THE PROCESS OF DYING, August 12, 2010

By 

James L. Park "James Leonard Park" (Minneapolis, MN USA) - See all my reviews
(REAL NAME)   

This review is from: Managing Death (Paperback)

James M. Hoefler
Managing Death

(Boulder, CO: Westview Press, 1997) 206 pages
(ISBN: 0-8133-2816-0; hardcover)
(Library of Congress call number: R726.H564 1997)

Hoefler documents a broad consensus among almost all groups
(doctors, nurses, hospitals, religious organizations)
that have taken official positions
concerning how to manage the process of dying:

1. Forgoing medical treatment and life-supports is not suicide.
2. Withholding and withdrawing life-supports are ethically the same.
3. Family members can decide for incapacitated patients.
4. Terminal illness is not required
as a precondition for making life-ending decisions.
5. Food and water need not always be provided.

We lack consensus about the following additional issues:

6. Persistent vegetative state (PVS),
wherein patients can be kept 'alive'
sometimes for years with the help of life-support systems.
More than 10,000 patients are in PVS at any given time in the United States.
If we had consensus, many more mechanical systems
supporting bodies in PVS would be disconnected.

7. Severe dementia is a condition in which the patient is no longer able
to make any meaningful decisions about life or death.
The number of such patients is measured in the millions at any given time.
But common sense and public opinion is slowly moving in the direction
of a consensus that the severely demented need not be kept alive by artificial means.
In other advanced countries, they are not routinely put on life-supports
--as is quite common in the United States.
But America as a society does not yet have a consensus
about how to treat former persons who have permanently lost
such capacities as consciousness, memory, language, & autonomy.

Hoefler discusses artificial nutrition and hydration
as end-of-life treatments.
Dying from lack of water is much quicker and easier than starvation.
Two months is a typical time to die from lack of food
--if there are no other physical diseases or problems.
A week or 10 days is all it takes to die
if all water and other fluids are given up.
According to all objective reports, this is a quick and easy death,
often without the need for pain medication.

The following points about voluntary death by dehydration (VDD)
come from this reviewer rather than from James Hoefler:

Giving up water and other fluids has some additional advantages
over other methods of bringing life to an end:

1. The patient can always change his or her mind.
Since it takes at least a week to die using this method,
the patient might see life quite differently
after a few days without food and water.
People tempted to commit irrational suicide
will probably recover from their suicidal urge before they die.
Then they will decide to begin eating and drinking again
--and continue to live indefinitely.
Other people will probably know about this decision to die
--which gives them ample opportunity to intervene
if they do not believe that death at this time is the best option.

2. Doctors do not need to be involved in the dying process at all.
Thus, there are no moral or legal questions
about doctors aiding in the process of dying.
Death by dehydration can be conducted completely at home,
without the need for any special equipment or drugs,
and without the involvement of any health-care institutions.

3. Giving up food and water is completely legal.
There are no laws against choosing this means of dying.
This eliminates all the secrecy involved in underground means of death.

4. Families can be informed ahead of time about the planned death,
so they can gather for the last days of their loved one if they please.

Death by dehydration might become
a preferred method for voluntary death
in the first few decades of the 21st century,
because it does not involve the state
or health-care institutions or personnel.
Patient autonomy is certainly preserved
because the decision to die must be affirmed over and over again
during the last week or 10 days of life.
And when the patient slips into unconsciousness,
the proxies and medical personnel can continue the decision to withhold fluids.

No new legislation is required to permit this method of choosing death.
We already have the power to end our lives in this way.
The danger of irrational suicide is sharply diminished.
(Irrational suicide is a danger in all methods that bring death suddenly.)
The patient will go to sleep at night and wake up again in the morning
several times during the period of dying from dehydration
which will give new perspectives on problems
that might otherwise lead to an irrational suicide.
If this plan for achieving a voluntary death is announced to others,
they might decide to provide new support or better medical care,
which might postpone dying until some later time.

(This reviewer has written a cyber-sermon on this subject:
Search the Internet for: "Voluntary Death by Dehydration".
A website for questions and answers is linked from the bottom of this essay.)

Hoefler hopes that death will be better managed in the future.
He suggests that the following ways to improve the process of dying:

1. New standards of care will be developed for mortally-ill patients.
Then they will no longer suffer the default decision,
which is always to provide maximum aggressive medical care:
Because it can be done, it will be done
--until someone decides otherwise.

2. We will make better use of hospice care.
Now it is often used just for the last week of life--or last few hours.
Taking advantage of hospice services
for several weeks or months
can greatly improve the process of dying.

3. We will develop a clearer concept of medical futility.
Research will show more clearly than ever before
which medical treatments are useful and which are useless
in the various situations in which such treatments might be used.
Not only the medical profession but also the general public
will reach a more reasonable consensus
about when to omit or withdraw
high-tech medical care at the end of life.

4. End-of-life decision-making will become more open and rational.
Both health-care professionals and the general public
will be better educated in order to make wiser end-of-life decisions.
Death can be better managed rather than fought every step of the way.

5. We will reject the slippery-slope arguments
of those who oppose making any life-ending decisions.
By paying close attention to the particulars of each case
rather than trying to enforce rigid rules of morality,
wise decisions will emerge that can be embraced by everyone involved.

6. Advance Directives will be used more fully and wisely,
so that we can choose our own pathways towards death,
rather than being handled according to the standard operating procedures
of the hospital or the medical profession.

Managing Death is a basic and moderate book about process of dying.
Hoefler does not attempt to break new ground.
Rather he clarifies the consensus that we already have achieved
--and projects the elements of a new consensus
that is now beginning to emerge in our collective thinking.

Everyone concerned about the process of dying
should read Managing Death.

If you would like to see other good books favoring improvements in dying,
search the Internet for: "Books on the Right-to-Die".

James Leonard Park, advocate of the right-to-die with careful safeguards.