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h a n d b o o k f o r h e a lt h c a r e e t h i c s c o m m i t t e e s
This page intentionally left blank
handbook f o r h e a lt h c a r e e t h i c s c o m m i t t e e s

Linda Farber Post

Je√rey Blustein
Nancy Nevelo√ Dubler

the johns hopkins university press baltimore

The views expressed herein by Kenneth A. Berkowitz are his and do not necessarily reflect the views
of the VHA National Center for Ethics in Health Care, the Veterans Health Administration, or the
Department of Veterans Affairs.

The views expressed herein by Jack Kilcullen do not necessarily reflect those of the Washington
Hospital Center.

The views expressed herein by Tia Powell do not necessarily reflect those of the New York State Task
Force on Life and the Law.

Nothing contained in this book is meant to imply or suggest any sponsorship, affiliation, or endorse-
ment by Montefiore Medical Center of any of the opinions or positions taken in the book.

∫ 2007 The Johns Hopkins University Press

All rights reserved. Published 2007
Printed in the United States of America on acid-free paper
9 8 7 6 5 4 3 2 1

The Johns Hopkins University Press

2715 North Charles Street
Baltimore, Maryland 21218–4363
www.press.jhu.edu

libr ary of congress c ataloging-in-public ation data

Post, Linda Farber.
Handbook for health care ethics committees / Linda Farber Post,
Jeffrey Blustein, and Nancy Neveloff Dubler.
p. ; cm.
Includes bibliographical references and index.
ISBN 0-8018-8448-9 (pbk. : alk. paper)
1. Medical ethics committees—Handbooks, manuals, etc.
I. Blustein, Jeffrey. II. Dubler, Nancy N. III. Title.
[DNLM: 1. Ethics Committees, Clinical—ethics. 2. Bioethical Issues.
3. Ethics, Clinical. WB 60 P857h 2006]
R725.3.P67 2006
610—dc22 2006012324

A catalog record for this book is available from the British Library.
To all the health care ethics committees
whose work continually enhances
the quality of health care
This page intentionally left blank
contents

Preface xi

Introduction. The Nature and Functioning of Ethics Committees 1

t i a p o w e l l a n d j e f f r e y b lu s t e i n

i curriculum for ethics committees 9

1. Ethical Foundations of Clinical Practice 11

The Role of Ethics in Clinical Medicine, 12

Ethics Committees in the Health Care Setting, 12
Fundamental Ethical Principles, 15
The Role of Culture, Race, and Ethnicity in Health Care, 18
Conflicting Obligations and Ethical Dilemmas, 19

2. Decision Making and Decisional Capacity in Adults 23

Health Care Decisions and Decision Making, 24

Decision-making Capacity, 24
Assessment and Determination of Capacity, 27
Deciding for Patients without Capacity, 30

3. Informed Consent and Refusal 37

Evolution of the Doctrine of Informed Consent, 38

Elements of Informed Consent and Refusal, 39
The Nature of Informed Consent, 43
Exceptions to the Consent Requirement, 45
viii contents

4. Truth Telling: Disclosure and Confidentiality 49

Justifications, 51
Disclosure, 51
Disclosure of Adverse Outcomes and Medical Error, 56
Confidentiality, 59

5. Special Decision-making Concerns of Minors 67

Decisional Capacity and Minors, 67

Consent for Minors, 71
Confidentiality and Disclosure, 79
Special Problems of the Adolescent Alone, 80

6. End-of-life Issues 85

Decision Making at the End of Life, 86

Defining Death, 87
Advance Health Care Planning, 89
Goals of Care at the End of Life, 96
Forgoing Life-sustaining Treatment, 99
Protecting Patients from Treatment, 101
Rejection of Recommended Treatment and Requests
to ‘‘Do Everything,’’ 102
Medical Futility, 103

7. Palliation 108

From Caring to Curing and Back Again, 108

The Experience of and Response to Pain, 109
The Moral Imperative to Relieve Pain, 113
Physician-assisted Suicide, 115

8. Justice, Access to Care, and Organizational Ethics 120

Access to Health Care in the United States, 121

A Right to Health Care?, 124
Theories of Justice, 125
Rationing, 126
Health Care Organizational Ethics, 128
 contents ix

ii c l i n i c a l e t h i c s c o n s u lt a t i o n 137

9. Approaches to Ethics Consultation 139

k e n n e t h a . b e r ko w i t z a n d n a n c y n e v e lo f f d u b l e r

Three Models of Ethics Consultation, 140

Critical Success Factors for Ethics Consultation Services, 142
Policy, 144
Two Approaches to Clinical Ethics Consultation, 144

10. Sample Clinical Cases 154

Advance Directives, 154

Autonomy in Tension with Best Interest, 158
Confidentiality, 162
Decisional Capacity, 165
Disclosure and Truth Telling, 168
End-of-life Care, 172
Forgoing Life-sustaining Treatment, 176
Goals of Care, 177
Informed Consent and Refusal, 181
Medical Futility, 183
Parental Decision Making, 184
Surrogate Decision Making, 186

iii w h i t e pa p e r s , m e m o r a n d a , g u i d e l i n e s , a n d p r ot o c o l s 191

Allocating Critical Care Resources: Keeping the Teeth in ICU Triage 192
j a c k k i lc u l l e n

Justice and Access to Unreimbursed Therapies 199

Guidelines for Transferring Patients between Services 202
Decision-making Protocol for the Patient Alone 205

iv sample policies and procedures 209

Access to Bioethics Consultation 210

Advance Directives 215
Determination of Brain Death 229
Do-not-intubate (DNI) Orders 239
Do-not-resuscitate (DNR) Orders 242
Forgoing Life-extending Treatment 266
x contents

v institutional code of ethics 279

vi key legal c ases in bioethics 285

Informed Consent 286

Health Care Decision Making 287
State Action to Protect Public Health 292
Confidentiality 293
Medical Decision Making for Minors 293
Reproductive Rights 295
Health Care Reimbursement 299

vii an ethics committee meeting 301

Index 323
p r e fac e

Anyone who has been paying attention to health care—patient, family member, profes-
sional care provider, policy maker, or interested observer—appreciates the profound
changes during the past decades. Major advances in scientific knowledge, clinical skill,
and technology have been paralleled by significant developments in how health care
decisions are made and implemented. Decision making that used to be confined to the
patient and family doctor now includes a whole cast of additional players, includ-
ing consulting clinicians, relatives, health care proxy agents, risk managers, attorneys,
judges, ethicists, organizational administrators, insurers, and other interested parties.
Among the most effective and valued resources in the health care decision-making
process is you—the institutional ethics committee. As medicine becomes more com-
plex, fiscal and bureaucratic pressures mount, and governmental regulations expand,
clinicians and administrators increasingly look to you for analysis and guidance in
resolving health care problems. Depending on the size and needs of the institution, the
ethics committee typically serves as moral analyst, information clearing house, dispute
mediator, educator, policy reviewer, and clinical consultant. The importance and scope
of these responsibilities suggest that committees should be familiar and comfortable
with bioethical theory and analysis, clinical consultation skills, institutional policies,
legal precedents, organizational function, and resource allocation.
At this point, you have every right to say, ‘‘Are you kidding? Our committee is made
up of clinicians and administrators who volunteer our time because we are interested in
the ethical issues in health care. But it’s all we can do to keep up with what we need to
know to meet our clinical and administrative responsibilities. Don’t ask us to take a
course in bioethics.’’
Your very legitimate concern is what prompted this book—a handbook, not a text-
book—that distills the important information and presents a basic foundation of bio-
ethical theory and its practical application in clinical and organizational settings. Bio-
ethics raises complex questions that require essays rather than short answers, and we
have packed a great deal into this volume, including theory, vignettes, discussion ques-
tions, and suggested strategies. To make the material more accessible and useful, we
have provided illustrative cases and ethical analyses to explain how the principles and
xii p r e fac e

concepts apply to what you do. The book is divided into the following sections, each of
which addresses one or more ethics committee functions:

≤ an eight-chapter ethics curriculum, organized according to the issues that ethics

committees typically address
≤ an introduction to clinical ethics consultation, including examples of clinical
cases raising ethical issues that trigger requests for consultation by an ad hoc
group and/or review by the full committee
≤ examples of memoranda, guidelines, and protocols that can be generated and
discussed by ethics committees
≤ examples of institutional policies that would be drafted or reviewed by ethics
committees
≤ an example of an institutional code of ethics
≤ summaries of key legal cases in bioethics
≤ a transcript demonstrating how an ethics committee would address a difficult
issue referred for its consideration

This handbook grew out of the twenty-seven-year history of the Montefiore Medical
Center Bioethics Committee and Consultation Service and the frequent requests from
other committees to share what we have learned. While the examples are drawn largely
from the Montefiore experience, our goal is to provide information and suggestions
that can be adapted to the needs of a wide range of committees. In the pages that follow,
we talk to the members of both well-established and newly formed ethics committees in
large academic medical centers, small community hospitals, nursing homes, and other
care-providing agencies. We hope that this resource will stimulate your committee,
inform its deliberations, and enhance its contribution to the care delivered in your
institution.

■
This handbook owes its existence and utility to numerous individuals and groups,
whose invaluable contributions must be acknowledged. Because the book’s inspiration
is drawn from our collective experience at Montefiore Medical Center, most of those
who were so helpful are part of that remarkable institution.
First and most important is the Montefiore Medical Center Bioethics Committee.
Since its establishment in the mid-1980s, this multidisciplinary body has steadily in-
creased the scope of both its membership and agenda, developing a considerable body
of knowledge and skill in clinical and organizational ethics. The committee’s eagerness
to address new, sometimes controversial issues, its willingness to revisit previous rec-
ommendations in light of recent developments, and its determination to be actively
involved in education, consultation, and policy review have made it a respected and
routinely accessed institutional resource. This handbook reflects the considerable expe-
 p r e fac e xiii

rience and insights of the Montefiore Bioethics Committee, which we hope your com-
mittee will find useful.
The effectiveness of an ethics committee depends in large part on whether it is
marginalized or fully integrated into the functioning of the institution. The Montefiore
administrative and clinical leadership has historically demonstrated support and re-
spect for the Bioethics Committee, encouraging its robust role throughout the medical
center. The collaborative relationship with the offices of the medical director, nursing,
social work, legal affairs, and risk management has contributed significantly to the
practical application of ethics described in this book. Medical Directors Dr. Brian Currie
and Dr. Gary Kalkut, Director of Clinical Affairs Lynn Richmond, and Associate Legal
Counsel Mary Scranton deserve special gratitude for their assistance in shaping the
manuscript. Drs. David Hoenig, Martin Levy, Grace Minamoto, and Albert Sauberman
provided important feedback on draft chapters that were piloted in their resident train-
ing programs. Dr. Kalmon D. Post read and reread the manuscript through its numerous
incarnations and contributed valuable clinical insights. Maria denBoer provided metic-
ulous manuscript review and editing, and Kim Johnson carefully guided the manu-
script through production editing. Our extraordinary editor, Wendy Harris, shep-
herded the book from first draft to finished product with skill, support, tact, attention
to detail, and surpassing patience.
Several people contributed their considerable expertise by writing selected portions
of the handbook. Dr. Tia Powell, executive director of the New York State Task Force on
Life and the Law, co-authored the introduction on the nature and functioning of ethics
committees, which provides the context for the book. Dr. Kenneth Berkowitz, chief,
Ethics Consultation Service, Veterans Administration National Center for Ethics in
Health Care, co-authored chapter 9, ‘‘Approaches to Ethics Consultation,’’ in part II. Dr.
Jack Kilcullen, surgical critical care attending at Washington Hospital Center and for-
mer member of the Montefiore Bioethics Committee, wrote ‘‘Allocating Critical Care
Resources: Keeping the Teeth in ICU Triage,’’ which appears in part III. Research assis-
tants Dr. Kiyoshi Kinjo, Katharine Michi Ettinger, and Margot Eves were enormously
helpful in gathering and organizing material. Several institutions generously shared
their policies for comparison in parts IV and VI, including The Cleveland Clinic, Hen-
nepin County Medical Center, Lenox Hill Hospital, Long Island Jewish Medical Center,
The Methodist Hospital, Montefiore Medical Center, Mount Sinai Medical Center,
Oregon Health and Science University, University of California at San Diego
Healthcare, and Wyckoff Heights Medical Center.
Finally, this book would not have been possible without the encouragement, critical
commentary, and general forbearance of our families.
This page intentionally left blank
h a n d b o o k f o r h e a lt h c a r e e t h i c s c o m m i t t e e s
This page intentionally left blank
 Introduction:
The Nature and Functioning
of Ethics Committees
t i a p o w e l l , m . d . , a n d j e f f r e y b lu s t e i n , p h . d .

Ethics committees vary from institution to institution along every significant dimen-
sion, including the number and qualifications of members, types of activities performed,
the visibility of those activities, and perceived quality and usefulness. Across the coun-
try, some committees flourish while others fail to thrive. New committees, as well as
those of long duration, can assess and change a variety of factors that may improve
their chances of survival and add to their success in supporting the ethical practice of
health care at their institutions.

functions

Traditionally, ethics committees have addressed some or all of three functions: edu-
cation, policy development, and consultation. These functions are discussed in later
chapters; here, we focus on the committee’s obligation to define for itself which of these
activities it will take on. In each of the three domains, the responsible committee
members should clarify their goals and assess how they might attain them more effec-
tively. For instance, if the ethics committee will provide ethics education, the commit-
tee should define its goals for education. A discussion aimed at improving educational
efforts might focus on questions like the following: Toward whom should education be
directed and in what format? Do committee members have sufficient expertise to teach
ethics? Can they improve their knowledge base through continuing ethics education?
If the hospital is affiliated with a medical school, are ethics committee members in-
volved in teaching students? If not, can those who do teach students join the commit-
tee and lend their expertise to other groups within the institution? Are teaching ac-
tivities geared to the needs of the institution? For instance, have members met with
various groups, such as nursing, outpatient clinics, and the Emergency Department to
see if they have a troubling case or other specific request for ethics teaching? Is there a
set of basic topics in ethics for which the committee can offer instruction? Are there
helpful articles and other prepared materials to distribute as part of the educational
effort? Do teachers routinely provide evaluation forms so that they can learn which
topics and instructors are well received and useful?
Similarly, the committee should assess its goals for policy development. If other
≤ introduction

groups also handle policy development, the ethics committee might collaborate in
some cases or take over development of policies in others, depending on the policy in
question. For instance, the ethics committee might serve as consultant to colleagues in
palliative care for policies on pain control at the end of life, but might have primary
responsibility for revising a policy on do-not-resuscitate orders. The ethics committee
should not attempt to duplicate work that is already handled well elsewhere, par-
ticularly in the domain of policy development. Rather, designated committee members
can reach out to other divisions within the institution so that ethics expertise may be
incorporated into policies throughout all hospital departments.

ethics consultations and committees

Clinical ethics consultation is a particularly challenging function and is handled dif-

ferently at different institutions. In some cases, consultation is handled by a subgroup
of the ethics committee, while in other facilities an entirely separate group or individ-
ual provides consultation (Fox, 2002). If the ethics committee will take primary re-
sponsibility for ethics consultation, it needs to provide requisite training and support
for consultants. This book provides a curriculum for such training; consultants may
also wish to consider some of the training programs that are now emerging across
the country.

membership

The committee should examine whether its membership reflects sufficient diversity to
represent the whole institution. While some early ethics committees were constituted
entirely of physicians, a committee with such a limited range of members is unlikely to
be an effective resource to the entire institution. For instance, a committee composed
only of doctors is not best qualified to understand, support, and provide ethics expertise
for nurses, social workers, and other health professionals. These distinct health profes-
sions adhere to specific codes of ethics and confront dilemmas that can differ from those
that physicians face. Thus, allied health professionals will be represented on a well-
designed ethics committee. Some committees, though by no means all, include commu-
nity representatives as a way of bringing the patient’s voice into the committee’s deliber-
ations. Community members who participate in clinical discussions regarding patient
information must offer the same guarantee of confidentiality as health professionals.
Ethnic and cultural diversity is also important within the committee membership,
because a significant number of consults stem from differences in religious practices
and cultural expectations. For example, patients and family members from many cul-
tures fear that full disclosure of a cancer diagnosis will rob patients of all hope (Powell,
2006). An ethics committee member from the same community serves as an educa-
 t h e n atu re a n d fu n c t i o n i n g o f et h i c s com m i t t e e s ≥

tional resource to colleagues and as a helpful liaison to patients, professionals, and

the committee.
As much as an effective committee requires diversity of representation, it also needs
stability of membership. A frequently changing membership decreases the ease with
which colleagues can identify those with ethics expertise. Moreover, the committee
cannot build upon the experience and continued training of its membership if it is
constantly changing. Committees with a high rate of turnover (or a significant propor-
tion of no-show members) should view this as a sign of failure to thrive; busy profes-
sionals will not devote their time to a group that accomplishes little or whose work is of
poor quality. In contrast, committees known for effective and skillful work enjoy a flow
of volunteers seeking to join. Poor meeting attendance and a high drop-out rate signal
the immediate need for intervention. The committee needs to address frankly every
aspect of its functioning, from who chairs meetings and how effectively they are run, to
whether the committee’s goals are clear, realistic, useful, and adequately met.
The committee membership should be diverse in terms of whom it represents, but
also must include a broad range of skills and knowledge. The American Society for
Bioethics and Humanities produced a valuable report in 1998 entitled Core Competen-
cies for Health Care Ethics Consultation, which is required reading for any ethics consulta-
tion service. Though specifically geared to the task of ethics consultation, these core
competencies are also a useful benchmark for ethics committees that provide education
and policy development. The skills and knowledge described need not all be present in
the same individual. In fact, a great benefit of the committee structure is that collective
expertise can surpass that of any one person. Some of the skills noted in Core Competen-
cies are the abilities to identify and analyze values conflict, facilitate meetings, listen
and communicate well, and elicit the moral views of others. Necessary knowledge areas
are quite broad and include moral reasoning, bioethics issues, institutional policies,
relevant health law, and beliefs and perspectives of staff and patients. Committees that
function at a high level monitor their strengths and gaps in expertise and skill, and
address those gaps by adding skilled members and/or encouraging continuing educa-
tion for individual members and the group as a whole. In addition to ongoing educa-
tional efforts for members, a committee can also devise an orientation manual and a set
of educational expectations for new members. Such a manual might include a list of
useful reference works and journals in medical ethics, as well as copies of relevant
institutional policies. Mentorship by a senior committee member to whom questions
may be addressed, and information about continuing education opportunities would
also be valuable. Providing a useful orientation for members new to the committee can
be particularly helpful to those committees that have suffered from high turnover or
low interest. Sitting through a series of meetings without having a clear role or under-
standing of the goals can lead new members to drift away instead of staying and con-
tributing to the success of the committee.
∂ introduction

expertise in ethics

Ethics committees perform a unique function within a health care institution by virtue
of the fact that they possess expertise in the area of ethics, an expertise that other bodies
in the organization generally lack. Doubts may be raised, however, about whether there
is such a thing as ethics ‘‘expertise’’ and, hence, whether any individual or group can
possess it. The notion of expertise in ethics is not particularly fashionable these days in
a culture like ours where relativism, or at least what passes for relativism, is in the
ascendance and traditional views of legitimacy and authority are called into question.
The notion of expertise in ethics also smacks of elitism, whereas it seems to be a hall-
mark of our democratic society that everyone is entitled to her own opinion about right
and wrong. It is critical, therefore, to characterize accurately the sort of ethics expertise
that ethics committees can offer.
As already noted, the expertise at issue here involves several components. Knowl-
edge of general ethical concepts and principles and some understanding of ethical
theory are important requirements, but not all committee members need have exten-
sive philosophical training in ethics. Every committee, however, should have among its
members an ethicist with at least some formal background in this area who is conver-
sant with the relevant ethics literature and can educate other committee members in
the fundamentals of ethics. In addition to familiarity with principles and concepts,
committee members should be able to distinguish issues about which there is con-
sensus in the literature from those that are controversial, to think about ethical prob-
lems in a critical and analytic fashion, and to be sensitive to and knowledgeable about
cultural differences and power asymmetries in clinical practice. Clearly, there is much
that committee members have to learn and, for this reason, committee self-education
cannot be a one-time effort but must be an ongoing process.
Skills are also important ingredients of the ethics expertise that ethics committees
possess, and they too require practice and continual honing. These include the follow-
ing: the ability to communicate effectively and teach others; the ability to facilitate
discussion and mediation of ethical conflicts; and, as a foundation for the rest, skill at
discerning the existence and nature of particular ethical problems and dilemmas.
There are widely accepted ethical (to say nothing of legal) principles that limit the
options available for solution of ethical problems, and there is a consensus within the
medical and ethics literature on particular issues. Even when ethics committees have to
work through cases involving patients and families from different cultures, cultural
sensitivity, not a relativism of ethical view, seems to be the appropriate response. Fi-
nally, there is no basis for the charge of elitism if it is understood that everyone on the
committee can make a valuable contribution to the identification, analysis, and resolu-
tion of ethical issues.
 t h e n atu re a n d fu n c t i o n i n g o f et h i c s com m i t t e e s ∑

leadership

Committee leadership is of crucial importance in shaping the nature and success of the
committee. The tenure of the committee chair should be long enough for both hospital
leadership and other colleagues to identify the leader with the ethics committee and its
work. Though some committees have adopted a rotating chair, this strategy has the
disadvantage of diffusing authority and decreasing visibility. On the other hand, some
chairs do not provide effective leadership and an effort to support term limits may be a
way to bring new energy to such a committee. The ethics committee chair should be a
person respected within the institution, as well as someone with ethics expertise, yet
not every facility contains a person who fits this description ideally. Committees whose
chair has great institutional credibility but limited formal training should be especially
conscientious in continual self-education and efforts to enlist ethics professionals with
formal training. A committee whose chair offers formal ethics expertise but limited
clinical experience or institutional recognition must build collegial relationships with
clinicians. A strong, knowledgeable, and well-respected committee chair is critical to
ethics committee survival. The ethics committee chair functions as liaison between the
committee and the rest of the institution. When the committee finds that a difficult
recommendation is nonetheless the right one, a chair with strong collegial ties to lead-
ership can help present the committee’s views effectively. A committee chair who an-
tagonizes colleagues with judgmental or arrogant pronouncements about what is and is
not ethical undermines the work of the committee and may even cause its demise. In
contrast, a chair who mediates conflict and addresses ethical tensions effectively and
respectfully is an invaluable asset to the committee and the institution.

securing a foothold

The ethics committee should be situated within the overall structure of hospital gover-
nance. Whether the committee reports to the medical board or directly to the hospital
leadership, a clear reporting structure creates accountability for the ethics committee,
as is appropriate for any workgroup in the institution. At the same time, the reporting
structure shows the committee where it may turn when it requires additional support.
That support may be financial, for example, funding for a lecture series, or it may be
political, as when the committee wants to address a controversial topic like question-
able billing practices in one hospital division.
An ethics committee will not flourish and may not even survive in a useful way
unless it has the support of the institution, from both leadership and staff. Hospitals in
which senior leaders are committed to ethics reflect that commitment in large and
small ways throughout the institution. On the other hand, if a key leader—for instance,
∏ introduction

the chair of a powerful department—doubts the value of ethics endeavors, the institu-
tion will follow that lead and ethics activities will be peripheral to the hospital’s mis-
sion. New committees and those hoping to improve their efficacy need to examine
their level of institutional support. Keeping in mind that hospital directors face extraor-
dinary demands on their time, attention, and financial resources, the ethics committee
may wish to consider ways in which support might be increased. Before approaching
leadership to ask for support in terms of space, money, or other resources, the commit-
tee should define what it offers the institution in exchange for that support. An ethics
committee that can show that its current or planned services are important and ef-
fective is far more likely to win initial or sustained support than a committee that can
define neither its goals nor its accomplishments. The task of clearly defining goals and
seeking more effective ways to attain them is a key aspect of earning and deserving
support from hospital leadership. Ethics committees that assume that their name alone
assures them of support are unlikely to flourish.
Support does not only come from above. A committee may enjoy strong backing
from leadership but fail to win the respect of colleagues; such a committee will not
thrive. Therefore, in addition to winning the confidence of the institution’s leadership,
the committee must gain a broad base of support from staff in different departments
and roles. The best way to earn support, of course, is to provide a valuable service. A
committee that actively seeks out ways in which it can be helpful and provides useful
assistance in addressing ethical problems will enjoy the support of its lucky institution;
an ethics committee that sits alone in the boardroom waiting for consults will fail. The
delicate balance here is to avoid intruding while providing easy and broad access to
ethics expertise. Some ethics committees and consultants make rounds with medical
teams as a means of increasing visibility and offering real-time assistance. The benefit of
this approach is that it brings ethics into the daily fabric of clinical care, which is where
it should be. The liability is that many ethics dilemmas cannot be solved on the spot.
Consultants must avoid the urge to please colleagues by providing quick answers that
lack depth. For example, consultants who round with medical and surgical teams must
have the confidence and experience to note when a situation requires a more lengthy
and in-depth resolution process than can be provided during rounds.
In summary, ethics committees that flourish have several elements in common.
Their goals are clearly defined, and continual efforts are made to improve the ways in
which these goals are met. Membership is professionally and culturally diverse, and
includes significant expertise in ethics. The committee seeks to build strong collegial
relationships with both leadership and colleagues. Committees that provide effective
ethics education, policy development, and consultation support the delivery of excel-
lent health care at their institutions.
 t h e n atu re a n d fu n c t i o n i n g o f et h i c s com m i t t e e s π

references

American Society for Bioethics and Humanities, Task Force on Standards for Bioethics and Humani-
ties. 1998. Core Competencies for Health Care Ethics Consultation: The Report of the American Society
of Bioethics and Humanities. Glenview, IL: American Society for Bioethics and Humanities.
Fox E. 2002. Ethics consultations in U.S. hospitals: A national study and its implications. Paper
presented at the Annual Meeting of the American Society of Bioethics and Humanities, October
24, 2002, Baltimore, MD.
Powell T. 2006. Culture and communication: Medical disclosure in Japan and the U.S. The American
Journal of Bioethics 6(1):18–20.
This page intentionally left blank
 part i

Curriculum for Ethics Committees

Part I is an eight-chapter curriculum designed to introduce the fundamentals of bio-

ethics, explain the key concepts, and provide a basic analytic framework for addressing
and resolving ethical dilemmas. Each chapter highlights a set of ethical issues that
commonly arise in the clinical setting and generate requests for ethics committee atten-
tion. It is beyond the scope of this handbook to provide a comprehensive treatment of
these topics, and our discussion of the basic ethical principles and concepts draws on
the work of expert theorists and practitioners who have contributed to the vast schol-
arly and clinical literature.
We encourage you to consult the selected but by no means exhaustive references
listed at the end of each chapter. Classic texts, such as Beauchamp and Childress’s
Principles of Biomedical Ethics, anthologies, such as Arras, Steinbock, and London’s Ethi-
cal Issues in Modern Medicine, newsletters, such as Medical Ethics Advisor, as well as jour-
nals, such as the Hastings Center Report, the Journal of Law, Medicine & Ethics, The Ameri-
can Journal of Bioethics, and the Journal of Clinical Ethics, should be part of any ethics
committee’s library. The American Society for Bioethics and Humanities’ forthcoming
publication Improving Competence in Ethics Consultation: A Learner’s Guide will be a valu-
able resource for individuals and organizations providing clinical ethics consultation
and education. Finally, Websites, such as www.asbh.org (American Society for Bioethics
and Humanities) and www.ethicsweb.ca/resources/bioethics/institutes.html (a com-
prehensive list of resources with links to ethics institutes and organizations), are an
important source of current information about what is happening in bioethics. These
references are essential, providing ready access to the relevant research and in-depth
analysis applicable to the cases and issues that committees consider.
This page intentionally left blank
∞ Ethical Foundations
of Clinical Practice

The role of ethics in clinical medicine

Ethics committees in the health care setting
Fundamental ethical principles
Respecting patient autonomy
Beneficence
Nonmaleficence
Justice
The role of culture, race, and ethnicity in health care
Conflicting obligations and ethical dilemmas

||| As a member of your hospital’s ethics committee, you have been called by Dr. Thomas, a
second-year surgical resident who was paged for the following consult: Ms. Lawrence is a
≤≥-year-old woman who was returning home from her bridal shower when her car skidded on
the ice and hit an oncoming truck. Although her multiple injuries are serious, with immediate
surgery and replacement of lost blood, her chances of full recovery are excellent.
Ms. Lawrence is in considerable pain, but she appears coherent and her answers to
Dr. Thomas’s questions reflect understanding of her condition, the treatment options, and
their consequences. Because of her beliefs as a Jehovah’s Witness, however, she will not
accept blood or blood products and will not consider surgery unless she is promised that
it will be done without transfusions.
Dr. Thomas knows that surgical and hemodynamic intervention can prevent this
patient’s almost certain death. He also knows that saving her life in this way will violate
Ms. Lawrence’s deeply held religious convictions. What are the conflicting medical, legal,
and ethical obligations? What is the role of the ethics committee in resolving this dilemma?
What resources are available to help you?

Perhaps the threshold question that should begin our discussion is, What is bioethics
and why does it matter? The short answer is that bioethics is the discipline that ad-
dresses the ethical issues that arise in the health care setting. As will become clear in the
∞≤ curriculum for ethics committees

following pages, however, bioethics does not lend itself to short answers, and further
definition is necessary. The concerns of bioethics include the well-being and dignity of
the patient; matters of choice and decision making; rights and responsibilities of the
patient, family, and care team; access to care; and fairness and justice in health policy.
These matters are neither new nor exotic, but they have become more prominent.
Health care has traditionally dealt with the profound moral issues of human existence,
including life, self-determination, suffering, and mortality. What has changed are the
complexity of medicine, the increased range of choices, and the way care is accessed
and delivered. The ethical implications of these matters have attracted heightened
attention, especially from those who make clinical and policy decisions. As applied
ethics has become an integral part of the health care setting, institutional ethics com-
mittees have become increasingly visible and active in clinical and organizational deci-
sion making. The goal of this handbook is to help your committee be a knowledgeable,
skillful, and effective ethics resource for your institution.

the role of ethics in clinical medicine

Ethics has a long and distinguished history grounding both the practice of medicine
and the laws related to it. Society considers ethical principles so important that it gives
them legal sanction in statutory and case law. Thus, ethical principles, such as respect
for autonomy and privacy, are translated into laws about informed consent and con-
fidentiality. It is important to note, however, that issues related to providing and forgo-
ing medical treatment are governed almost exclusively by state law, creating wide varia-
tion in the way these matters are handled. For example, decisions about withholding or
withdrawing life-sustaining measures might be very different if the patient were being
treated in New York or New Jersey. For this reason, your ethics committee should have
some familiarity with how your state laws and regulations address these issues.
Ironically, some of the most potentially beneficial developments have generated
some of the most difficult ethical problems. In critical, acute, and long-term care set-
tings, the very existence of new therapies often creates demand for their use, whether or
not they are medically indicated or ethically appropriate. Clinical research raises issues
of information disclosure, comparative levels of risks and benefits, and conflicts of
interest. Budgetary pressures constrain the allocation of resources. Standing at the in-
tersection of medicine, ethics, and law, bioethics provides a useful analytic framework
for committees charged with helping to resolve these dilemmas.

ethics committees in the health care setting

The development of bioethics as a powerful influence on the way health care is per-
ceived and practiced was part of a larger social transformation. A hallmark of the latter
 et h i c a l fo u n dat i o n s o f c l i n i c a l p r ac t i c e ∞≥

half of the twentieth century was the heightened notion of individual rights. Virtually
every social sphere was affected by the effort to promote equality and redress inequities
in race, gender, class, and education. In the context of the various rights movements,
the ethical principle of autonomy became the major support for individual empower-
ment and self-determination in health care, most prominently in the doctrine of in-
formed consent and refusal. In the process, patients became both partners in health
care decision making and informed health care consumers.
Ethical, legal, and scientific developments created an obligation to evaluate critically
the process of gathering scientific information, translating it into therapeutic applica-
tions, and using it responsibly. Advances in medical knowledge and skills generated a
new array of treatment options, as well as the concern that the ability to intervene could
become the obligation to intervene. For the first time, questions were raised not only
about how and when, but whether to treat. Under what circumstances should therapies
be withheld or withdrawn? When does the burden of an intervention outweigh its
benefit? How should decisions be made about the allocation of limited medical re-
sources? At the same time, the law was becoming involved in life-and-death matters
that used to be confined to the doctor-patient interaction.
Bioethics as a discipline is generally considered to have developed between the 1960s
and the 1980s as it became apparent that emerging issues could benefit from thoughtful
analysis by people with both clinical and nonclinical perspectives. Philosophers, social
scientists, theologians, legal scholars, and biomedical scientists increasingly focused
their attention on clinical research, allocation of limited resources, transplantation of
organs, reproductive technologies, genetic testing and treatment, terminal illness and
end-of-life care, and the obligations in the clinical interaction. Of particular relevance to
ethics committee background, these deliberations revealed that ethical analysis had
practical application in the research and clinical settings.
The hospital ethics committee was an early institutional effort to bring a formal
ethical perspective to the clinical setting, otherwise described as ‘‘a politically attrac-
tive way for moral controversies to be procedurally accommodated’’ (Moreno, 1995,
pp. 93–94). Hospitals began to establish ethics committees during the mid-twentieth
century to answer questions and help make decisions about health care issues with
ethical dimensions. These committees had their roots in several types of small decision-
making groups, each intended to address specific ethical problems. Sterilization com-
mittees, composed mainly of physicians with expertise in psychiatry and psychol-
ogy, functioned mainly during the 1920s and 1930s to determine which individuals
with mental disabilities should be involuntarily sterilized. Abortion selection com-
mittees functioned in many hospitals before the 1973 U.S. Supreme Court decision in
Roe v. Wade legalized abortion. Beginning in 1945, their purpose was to evaluate the re-
quests of women who wished to terminate their pregnancies and determine whether
therapeutic abortions were indicated to preserve the life or health of the prospective
∞∂ curriculum for ethics committees

mother. Dialysis selection committees emerged during the early 1960s in response to
the development of the dialysis machine, the first publicly recognized life-sustaining
technology. Composed of lay members of the community, they were charged with
choosing among the candidates with end-stage renal disease and determining who
would receive chronic hemodialysis.
Beginning in the 1960s, institutional review boards (IRBs) responded to revelations
of abuse in medical experimentation by reviewing all government-funded research
using human subjects. The 1974 federal mandating of IRBs represented the first codified
suggestion of institutional obligation to address ethical concerns. Prognosis commit-
tees were occasionally convened by the mid-1970s to assess the projected course of
patients’ illnesses. In its 1976 decision in In re Quinlan, the New Jersey Supreme Court
referred to an article by Dr. Karen Teel and recommended that hospitals have an ethics
committee to deal with termination of life-sustaining treatment for incapacitated pa-
tients. Although the court used the term ethics committee, it was actually suggesting a
prognosis committee that would render opinions on the likely benefits of continued
treatment for patients with grave and irreversible illness.
Infant care review committees began appearing in the wake of the 1982 ‘‘Baby Doe’’
ruling that permitted parents to approve withholding life-saving treatment from a
neonate with Down’s syndrome. These committees, which were intended to review
care plans for severely disabled newborns, were also recommended by the President’s
Commission for the Study of Ethical Problems in Medicine and Behavioral Research in
1983 and endorsed by the U.S. Department of Health and Human Services and the
American Academy of Pediatrics.
Medical-morals committees met in Catholic hospitals to address sensitive issues,
including those related to reproduction, analgesia, and extraordinary interventions at
the end of life, in terms of Church doctrine.
Against this backdrop, clinical and administrative staffs began to meet for inter-
disciplinary deliberations about issues of high-tech care, undertook self-education, and
exhibited a growing professional awareness of ethical implications. During the 1970s
and 1980s, hospitals began to establish ethics committees to provide guidance about
health care issues with ethical dimensions. Over time, these committees have taken
on the additional functions of staff education, clinical guideline development, institu-
tional policy advisement, and case review. Some ethics committees also advise on re-
source allocation and express or reinforce the institution’s commitment to cer-
tain values.
Since 1992, the Joint Commission on Accreditation of Healthcare Organizations
( JCAHO) has required as a condition of accreditation that each health care institution
have a standing mechanism to address ethical issues and resolve disputes. In addition,
several states have passed statutes requiring hospitals to have ethics committees. The
result is that almost all hospitals in the United States have ethics committees that meet
on a regular basis.
 et h i c a l fo u n dat i o n s o f c l i n i c a l p r ac t i c e ∞∑

As you read though this handbook, it is important to bear in mind that your com-
mittee does not own ethics in your institution. As discussed in the introduction, the
committee should strive to develop ethics expertise, but it would be counterproductive
to encourage the notion of ethics exclusivity and the perception that ethics resides only
in a select group. Rather, one of your most valuable roles is that of a resource that,
through education, policy development and consultation, helps clinical and admin-
istrative staff to integrate ethics knowledge and skills into their daily practice.
An important committee function is helping staff to identify ethical issues and
conflicts, develop the skills to handle routine cases in ways that you have modeled in
consultation on similar cases, and distinguish complex cases that require the attention
of your consultation service. One mark of a successful ethics consultation is when you
are stopped in the hall by someone who says, ‘‘Remember that case you consulted on
two weeks ago? Well, we had another one just like it and we didn’t have to call you. But
now, we’ve got one that really has us stumped and we need your involvement again.’’
While your committee retains the responsibility to provide ethics expertise, educa-
tion and guidance, it is important to reinforce the notion that the health care organiza-
tion and all those who practice in it are moral agents with ethical obligations that
cannot be delegated.

fundamental ethical principles

As you no doubt expected, any discussion of applied bioethics must begin with a review
of its theoretical underpinnings. Understanding the key concepts and how they relate
to clinical practice is essential to the effective functioning of ethics committees.
The core ethical principles that support the therapeutic relationship and give rise to
clinician obligations include

≤ respecting patient autonomy—supporting and facilitating the capable patient’s

exercise of self-determination in health care decision making
≤ beneficence—promoting the patient’s best interest and protecting the patient
from harm
≤ nonmaleficence—avoiding actions likely to cause the patient harm
≤ distributive justice—allocating fairly the benefits and burdens related to health
care delivery

Respecting Patient Autonomy

Autonomy is the ethical principle widely considered most central to health care
decision making because of its focus on self-governance and individual choice. Auton-
omy includes determination of health care goals, power over what is done to one’s
body, and control of personal information. Only when the individual cannot make
decisions are others asked to choose. Autonomy gives priority to personal values and
∞∏ curriculum for ethics committees

wishes, supporting choices that are informed and uncoerced, and confers the profes-
sional obligation to respect patient privacy and confidentiality.
The significance of autonomy to health care decision making is seen in the ethical
concepts of decisional capacity, informed consent and refusal, and truth telling. Pa-
tients exercise autonomy by making informed care decisions that reflect their goals,
values, and preferences. Clinicians demonstrate respect for autonomy by providing
information and guidance that enable patients to make knowledgeable decisions; hon-
oring patient choices and implementing them in care plans; preserving patient con-
fidentiality; and protecting the security of patient information.
It is important to recognize that the notion of autonomy encompasses a range of
conceptions, some highly individualistic and somewhat isolating, others more rela-
tional and compatible with communitarian values. The heightened emphasis our so-
ciety customarily places on individualism and independence is a largely Western phe-
nomenon and not universally shared. Despite our prevailing focus on self-governance,
not everyone is comfortable with or capable of pure autonomy. Patients with dimin-
ished or fluctuating cognition are likely to rely on spouses or adult children for help in
care planning. Others may come from cultures that favor decision making by the family
rather than the individual. For these patients, authentic decision making is an exercise
shared with trusted others and reflects supported or delegated autonomy.
Ultimately, respecting patient autonomy does not mean elevating it to a position
where it trumps all other considerations. While it is usually legally and ethically appro-
priate to honor the wishes of a capable patient, it is also necessary to consider the
ethical principles that give rise to other, often competing, obligations.

Beneficence

The principle of beneficence underlies obligations to provide the best care for the
patient and balance the risks or burdens of care against the benefits. Promoted goods
typically include prolonging life, restoring function, relieving pain and suffering, and
preventing harm. Beneficence is the principle with arguably the greatest resonance for
caregivers, whose traditional mission is to heal and comfort, and notions of nurturing
and protecting are reflected in caring for those who are most vulnerable. Perceptions of
benefit and best interest are not purely scientific, however, but involve expectations,
goals, and value judgments. Recognition that patients and their doctors may differ in
these assessments has been at least partly responsible for the noticeable shift from
physician paternalism to greater emphasis on patient choice.

Nonmaleficence

At the very core of the healing professions is the principle of nonmaleficence, cap-
tured in the ancient maxim, ‘‘First, do no harm.’’ This principle grounds obligations to
avoid the intentional infliction of harm or suffering, recognizing that conceptions of
 et h i c a l fo u n dat i o n s o f c l i n i c a l p r ac t i c e ∞π

harm, as of good, are inextricably tied to individual values and interests. Most, if not all,
therapies carry the potential for some risk as well as benefit, and it would not be feasible
to limit the therapeutic arsenal to treatments that are entirely benign. Nevertheless, the
benefits of recommended treatments are expected to outweigh the possible harms, and
physicians are required to discuss that calculus with their patients, comparing the
burdens and risks to the anticipated goods. Likewise, the duty to prevent foreseeable
harm requires investigators to disclose the benefits and risks of proposed research to
potential subjects and institutional review boards.

Justice

Justice or equity refers to those principles of social cooperation that define what
each person in the society or member of a group is due or owed—in short, what is fair.
The several types of justice all share the basic notion of treating similar cases similarly
and dissimilar cases dissimilarly. Most relevant to medical ethics is distributive justice,
which concerns the norms and standards for allocating benefits and burdens across a
given population. Distributive justice demands that the benefits, risks, and costs of
actions—in this case, access to resources related to physical and mental health—be
apportioned fairly and without discrimination on both societal and institutional levels.
According to the principle of distributive justice, there should be ethically defensible
reasons for why certain individuals or groups receive benefits or endure burdens that
other individuals or groups do not.

■
The four ethical principles discussed above—autonomy, beneficence, nonmaleficence,
and justice—have assumed a central place in much of bioethics literature, theory, and
clinical analysis. Our very brief tour just touches the surface and you are encouraged to
consult Beauchamp and Childress for an in-depth treatment. Because these principles
have validity and can be useful in thinking through ethical issues, they are referred to
frequently in the following chapters. As a cautionary note, however, it is important to
resist the temptation to employ principles in a mechanical fashion. If applicable and
used with judgment and sensitivity, they can inform sound ethical reasoning. If used
rigidly without reference to context and narrative, principlist ethics can lead to a dis-
torted and unhelpful analysis.
It is equally useful to consider clinical situations in terms of key ethical concepts,
such as decisional capacity, power imbalances, decision-making authority, access to
health care, pain and suffering, confidentiality, truth telling, informed consent, the
family’s role in decision making, the patient’s best interest, forgoing treatment, and
quality of life and death. These and other ethical issues will be referred to in analyzing
clinical situations throughout the curriculum in part I and discussing the clinical cases
in part II.
∞∫ curriculum for ethics committees

the role of culture, race, and ethnicity in health care

How people confront decisions about health care is shaped in large part by the beliefs,
attitudes, and values inherent in the cultures with the greatest formative influence on
them. Choices about advance care planning, approaches to decision making, disclosure
of information, life-sustaining interventions, and palliation are often informed by cul-
turally determined notions of self-governance and destiny, truth telling and protection
from harm, the power of language to reflect or create reality, filial obligation, the mean-
ing of suffering, religion and spirituality, historical discrimination, and mistrust of
health care or the health care system.
The following brief examples are offered to illustrate how culture, race, and ethnicity
can influence health care. Studies have found that European Americans, who tend to
value independence and self-empowerment, are more likely than others to favor ad-
vance directives, full disclosure of health information, and limited treatment at the
end of life. In contrast, African Americans have demonstrated reluctance to delegate
decision-making authority through advance directives, objection to limiting treat-
ment, and preference for aggressive life-sustaining technology, including cardiopulmo-
nary resuscitation. Hispanics have been shown to defer to physician judgment, value
decision making by the family rather than an appointed health care agent, and place
great importance on how the family is affected by the patient’s illness. Asian and Mid-
dle Eastern cultures typically prefer to protect patients from knowledge about serious
illness or impending death, and favor family rather than individual decision making.
Native American cultures tend to reject advance care discussions because they might
bring on the envisioned health problems. Reports of these studies emphasize the need
for balance in interpreting them. Overreliance on the findings risks cultural stereotyp-
ing, while indifference to cultural distinctions risks assuming that all patients share
Western attitudes and values (Morrison and Meier, 2004; Kagawa-Singer and Blackhall,
2001; Hopp and Duffy, 2000; Blackhall et al., 1999; Shepardson et al., 1999; Morrison et
al., 1998; Berger, 1998; Pellegrino et al., 1992).
The same commentators also point out that cultural determinants influence the
values and attitudes of physicians as well as those of their patients. The result is the
potential for misperception and miscommunication when the parties to the clinical
interaction come from different cultural backgrounds. A valuable ethics committee
function can be educating care providers about the personal and cultural differences
that influence the clinical dynamic and affect patient care. Consider, for example, a
series of grand rounds or in-service presentations on how cultural background can
inform patient and provider comfort with notions of autonomy, privacy, advance di-
rectives, informed consent, and disclosure.
 et h i c a l fo u n dat i o n s o f c l i n i c a l p r ac t i c e ∞Ω

conflicting obligations and ethical dilemmas

The several ethical principles discussed above confer on clinicians multiple ethical
obligations—duties that are grounded in moral norms and must be fulfilled unless there
are competing and more compelling obligations. Not surprisingly, these obligations
frequently collide.
The tension between and among ethical principles may create dilemmas for clini-
cians when their obligations are in conflict. Ethical dilemmas usually occur in two types
of situations. In some instances, an act can be seen as both morally justified and un-
justified, but the arguments supporting each position are inconclusive. This troubling
contradiction makes it difficult for the individual to determine the appropriate course
of action. Examples would be abortion and assisted suicide, both of which invoke
competing ethical norms. In other instances, an individual may be required to respond
to different moral imperatives and cannot do one without violating the other. For
example, care professionals are required to respect and promote the autonomy of their
patients and to protect and enhance their well-being, to provide care to those who need
it and to be responsible stewards of limited resources. Resolving these dilemmas requires
clinicians and ethics committees to scrutinize carefully the competing interests and
obligations, identify the likely consequences of the available choices, and weigh the
benefits and risks to those involved.
Let us return to Ms. Lawrence, the patient who is refusing blood transfusion. The
dilemma here concerns the tension between Dr. Thomas’s obligation to honor his
patient’s autonomous decision about blood transfusion and his obligations to prevent
harm and provide what he believes is the most beneficial care. On the surface, it seems
that he cannot possibly meet one obligation without violating the others, yet he must
take decisive action. Because the principles involved are so central to professional prac-
tice and the consequences in this case so profound, the goal must be to protect both Ms.
Lawrence’s rights and her well-being. The ethics committee member(s) can function
usefully in a consultative role as these issues are considered.
The first responsibility is to confirm that Ms. Lawrence is capable of making deci-
sions about her care and to ensure that she and Dr. Thomas have clarified the clinical
situation, the care goals, the therapeutic options, and their likely consequences. As
discussed in later chapters, the exercise of patient autonomy, through informed con-
sent and refusal, depends on the patient’s decisional capacity, the quality of the infor-
mation provided by the physician, and the trust underlying the therapeutic relation-
ship. An ethics consultation can create the opportunity for the patient and appropriate
members of the care team to engage in these important discussions.
The next step is to consider the ethical issues, including Ms. Lawrence’s right to
make care decisions based on her goals and values, and confirm that her refusal is the
product of her deeply held religious convictions, rather than coercion or misinforma-
≤≠ curriculum for ethics committees

tion about blood transfusions. The discussion should explore alternative options and
resources, including nonblood therapies and transfer to other institutions that special-
ize in treatment without transfusion. Ms. Lawrence, her family, and the clinical team
must be reassured that her refusal will in no way compromise the rest of her care.
Resolving the conflict between the obligation to respect the patient’s autonomy and
the obligations to promote her best interest and protect her from harm will require a
careful collaborative assessment of her decision making, including how she weighs the
benefits and burdens of the proposed treatment. While it is neither necessary nor ap-
propriate to argue her out of her religious beliefs, the ethics consultant is obliged to be
certain that her decision to forgo a life-saving intervention is informed, carefully con-
sidered, voluntary, and settled. If Ms. Lawrence genuinely believes that surviving with a
blood transfusion would be morally unacceptable, then, for her, the benefits of the
intervention would be significantly outweighed by the burdens of the outcome. Under
those conditions, her refusal of transfusion should be honored while she receives all
other appropriate care and support. In this time-consuming and exacting process, the
ethics committee consultant is a valuable resource, providing all parties with informa-
tion, ethical analysis, practical guidance, and support.
It should be remembered, however, that not only the patient’s autonomy is at stake.
Dr. Thomas and his colleagues also bring to this situation their professional obligations
and personal values. Not unreasonably, surgeons and/or anesthesiologists in this cir-
cumstance are likely to be very uneasy about attempting surgery under conditions that
restrict their ability to provide optimal care. Even though the patient has agreed to and
assumed the risks of surgery without blood transfusions, the doctors will argue that
they would be knowingly putting her at what they consider unacceptable risk. Doing so
would erode both their competence and professional integrity. Under these restrictive
conditions, many surgeons and anesthesiologists would prefer to transfer Ms. Lawrence
to colleagues or other institutions more comfortable with her limitations, agreeing to
operate only if alternatives were not available.

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ED, Mazzarella P, Corsi P, eds. Transcultural Dimensions in Medical Ethics. Frederick, MD: Univer-
sity Publishing Group.
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The Next Generation. Chicago: American Hospital Publishing.
Rothman DJ. 1991. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical
Decision Making. New York: Basic Books.
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Schneider CE. 1998. The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York:
Oxford University Press.
Shepardson LB, Gordon HS, Ibrahim SA, Harper DL, Rosenthal GE. 1999. Racial variation in the use
of do-not-resuscitate orders. Journal of General Internal Medicine 14(1):15–20.
Solomon MZ. 2005. Realizing bioethics goals in practice: Ten ways ‘‘is’’ can help ‘‘ought.’’ Hastings
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Thomasma DC, Monagle JF. 1998. Hospital ethics committees: Roles, membership, structure, and
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≤ Decision Making and
Decisional Capacity in Adults

Health care decisions and decision making

Decision-making capacity
Capacity and competence
Elements of decisional capacity
Decision-specific and fluctuating capacity
Assessment and determination of capacity
The importance of determining capacity
Who assesses decisional capacity?
Deciding for patients without capacity
Standards of decision making
Decision making for the formerly capacitated
Advance directives
Deciding for patients without capacity or advance directives
Decision making for patients who never had capacity

||| Mrs. Klein is an ∫Ω-year-old woman admitted from home five days ago with cellulitis of the
legs. Despite her discomfort, she has cooperated with her diagnostic work-up and treatment
and consented to all interventions related to the cellulitis. She was able to provide accurate
information about her medical history, which was corroborated by her niece. According to
both women, Mrs. Klein has been very healthy and self-su≈cient all her life, a state she
attributes largely to ‘‘keeping my distance from doctors and hospitals.’’ Her goal, expressed
repeatedly since admission, is ‘‘to go home and take care of my cats.’’
Mrs. Klein’s admission blood tests revealed anemia that suggests slow internal bleeding.
Despite repeated attempts to explain the dangers of unchecked bleeding and the importance
of identifying the source, she has consistently refused consent for a GI series. When asked
why she is opposed to a diagnostic work-up, she replies, ‘‘Darling, you look, you’ll find. No
more tests or treatments. Just get me back on my feet so I can go home to my cats.’’
After several days, the attending physician requests a psychiatric consult to do a capacity
≤∂ curriculum for ethics committees

assessment, suggesting that the patient is not capable of making decisions in her best
interest and cannot be discharged under these circumstances.
Why does no one question Mrs. Klein’s capacity to consent to treatment, only her capacity
to refuse?

We now embark on a discussion of the issues most frequently brought to ethics com-
mittee attention—how and by whom health care decisions are made. Ethical principles
require that decisions about care and treatment be made by the decisionally capable
patient (the subject of this chapter), following adequate discussion of the benefits,
burdens, and risks of the therapeutic options (the subject of the following chapter).
When the patient is not able to participate in this process, the responsibility for making
care decisions must be assumed by others.
The quality of the decision-making process and the validity of the resulting consent
or refusal are directly related to the clarity of physician-patient communications; the
patient’s understanding of the information presented; the physician’s attention to pa-
tient values and preferences; and the patient’s trust in the physician that encourages
questions and full discussion. Although decisional capacity and consent are thus inex-
tricably linked, for logistical purposes they are discussed separately in this curriculum.
This chapter examines decision making and capacity, while chapter 3 sets out the
ethical basis and significance of the consent process.

health care decisions and decision making

Health care in general and bioethics in particular deal with decisions requiring attention
to patient needs and preferences in the context of medicine’s capabilities and limita-
tions. These decisions involve deeply personal ideas about life and death; the meaning
of health, illness, and disability; and the importance of self-image, self-determination,
and trust. While the patient has the greatest stake in these decisions, others, including
family members and care professionals, bring their perceptions and concerns to the
discussion. Indeed, it is the value- and interest-based nature of care decisions that makes
them so complex and often difficult to negotiate.

decision-making capacity

It is tempting to suggest that, like obscenity, decisional capacity is something that

cannot be precisely defined but we know it when we see it. While we may sense that a
patient is or is not able to make decisions, intuition is not enough to guide an evaluation
with such important implications. In the health care setting, the exercise of autonomy
is promoted or hindered by the assessment of decisional capacity, which effectively
includes or excludes patients from making decisions about their care. Determining the
patient’s ability to understand the issues, consider the consequences of different op-
 d e c i s i o n m a k i n g a n d d e c i s i o n a l c a p a c i t y i n a d u lt s ≤∑

tions, and communicate these thoughts to professionals is key to supporting autonomy.

Without this set of cognitive capacities, patients will need assistance in making and
articulating choices. Indeed, as noted below, even capable patients can benefit from
assistance in making autonomous decisions. Excluding a decisionally capable patient
from making choices violates autonomy; treating an incapacitated patient ‘‘as if’’ she
were capable makes her vulnerable to the consequences of deficient decision making.
Thus, the clinical assessment of decisional capacity is critical to determining whether
the patient can participate in care decisions and provide informed consent and refusal.

Capacity and Competence

Although the terms capacity and competence are often used interchangeably, in the
health care setting there are important distinctions that go beyond semantics. Compe-
tence is a legal presumption that a person who has reached the age of majority has the
requisite cognition and judgment to negotiate most legal tasks, such as entering into a
contract, making a will, or standing for trial. Incompetence is a functional assessment
and determination by a court that, because the individual lacks this ability, she should
be deprived of the opportunity to do certain things. Because the legal system is and
should be rarely involved in medical decisions, it is customary to refer to the patient’s
decisional capacity, a clinical determination about the ability to make decisions about
treatment or health care.

Elements of Decisional Capacity

Decisional capacity refers to the patient’s ability to perform a set of cognitive tasks,
including

≤ understanding and processing information about diagnosis, prognosis, and

treatment options
≤ weighing the relative benefits, burdens, and risks of the therapeutic options
≤ applying a set of values to the analysis
≤ arriving at a decision that is consistent over time
≤ communicating the decision

Decisional capacity thus encompasses several skills, including understanding, as-

sessing, valuing, reasoning, and articulating the factors relevant to a choice. Capacity
can be seen as an index of a person’s ability to exercise autonomy by making decisions
that reflect personal preferences, values, and judgments at a given time. This is not the
same, however, as the person’s willingness to make autonomous decisions. Having ca-
pacity enables but does not obligate patients to act independently. Despite our good
intentions, we cannot drag people kicking and screaming into self-determination and,
in many instances, insisting that patients make decisions abandons them to their own
autonomy.
Frequently, capacitated patients look to family, friends, and trusted others to help
≤∏ curriculum for ethics committees

them exercise autonomous decision making. Patients demonstrate supported autonomy

when they rely on others for advice in making choices (‘‘I want my son to help make the
decision’’). Some patients, especially those who are elderly or from cultures in which
self-determination is not a central value, demonstrate delegated autonomy. These pa-
tients often entrust to others the authority to make decisions on their behalf (‘‘Talk to
my daughter and do whatever she thinks is right’’). Here, autonomy is expressed in the
voluntary choice to delegate rather than independently exercise decision-making au-
thority. Patients with capacity who benefit from the advice, guidance, and support of
clinicians and trusted others can be said to demonstrate assisted autonomy. The ethics
committee can perform a useful service by clarifying for the care team—through clinical
consultations, in-service presentations, or informal conversations—the several ways in
which patients can make authentic decisions.

Decision-specific and Fluctuating Capacity

Capacity is not global, but decision-specific, referring to the ability to make particular
decisions. A patient may have the ability to decide what to have for lunch but may be
incapable of weighing the pros and cons of surgery. For this reason, nothing is less
helpful than a chart note that says, ‘‘Patient lacks capacity to make decisions.’’ The
misleading implication is that the patient lacks the capacity to make all decisions,
effectively excluding her from making any decisions.
In fact, many patients have the capacity to make some decisions and not others. For
example, a lower level of capacity is required to appoint a health care proxy agent
(appreciation of the likelihood that someone will have to make decisions on her behalf
and consistent designation of the same person) than to make the often complex deci-
sions the proxy agent will eventually make. Thus, the appropriate response to the
question, ‘‘Does this patient have capacity?’’ is ‘‘For what decision?’’ Likewise, a request
for a capacity assessment is most helpful when it specifies the decision(s) at issue,
such as ‘‘Please evaluate the patient’s capacity to make decisions about discharge.’’ Dis-
tinguishing among the specific decisions facing the patient and assessing her capacity
to make them offers her the opportunity to make the widest range of choices within
her ability.
Just as capacity is not global in its application to all decisions, it is not always
constant. Depending on their age, cognitive abilities, clinical condition, and treatment
regimen, patients may exhibit fluctuating capacity, demonstrating greater ability to
make decisions at some times than others. For example, elderly patients, who are espe-
cially prone to ‘‘sundowning,’’ often exhibit greater alertness, sharper reasoning, and
clearer communication earlier in the day. Recognizing this tendency allows care pro-
viders to approach patients for discussion and decisions when they are at their most
capacitated, thereby increasing their opportunities for autonomous action.
To return to the case of Mrs. Klein, the 89-year-old patient with cellulitis of the legs, a
 d e c i s i o n m a k i n g a n d d e c i s i o n a l c a p a c i t y i n a d u lt s ≤π

critical threshold question is whether, in making a decision to refuse the diagnostic

work-up and return to her home, the patient is exercising decisional capacity. If her
decision is an informed and voluntary one that appreciates the implications and ac-
cepts the consequences, it should be honored, despite the caregivers’ concerns that it is
not in her best interest. Nevertheless, efforts to persuade her to reconsider and consent
to suggested treatments are still appropriate, especially if the potential risks of nontreat-
ment and the benefits of treatment are significant.
Disagreement with medical recommendations is not by itself evidence of a lack of
decisional capacity. Mrs. Klein’s decision may be foolish and ill advised, but it is not
necessarily the product of a misperception or delusion. Continued discussion will be
necessary to confirm her understanding and the consistency of her decision with char-
acteristic behavior and prior choices. She has led an independent life that she attributes
partly to avoiding doctors and hospitals. Her present decision to refuse the work-up,
therefore, conforms to a pattern of life choices that, until now, have served her rela-
tively well.
Care providers, including health care institutions, have an ethical and legal obliga-
tion to arrange for a safe discharge for their patients. Ethical concerns arise when capa-
ble patients make decisions that run counter to their best medical interests. Here, clini-
cians’ obligations to respect patient autonomy may be in tension with their obligation
to promote Mrs. Klein’s well-being and protect her from harm.
One way to address these conflicting obligations is to ensure that, when capable
patients are discharged, especially under less-than-optimal circumstances, they are en-
couraged to accept appropriate nursing and other home care services. In contrast, al-
lowing patients who lack capacity to elect an unsafe discharge is a form of patient
abandonment. Whatever the patient’s level of decisional capacity, involved family
should be encouraged to participate in discharge planning, follow-up care, and advance
care planning for future health care decision making.
Intervention by the bioethics consultation service or committee is often requested
in cases of uncertain patient capacity, usually when questions arise about consent for or
refusal of recommended treatment. These issues and the role of ethics intervention in
resolving them are discussed further in chapter 3.

assessment and determination of capacity

||| Mr. Herbert is back again. He is a ≥∫-year-old man who is confined to a wheelchair because
of bilateral amputations resulting from untreated leg ulcers. Mr. Herbert has had multiple
admissions to treat his repeatedly infected areas of skin breakdown. Once the wounds have
been cleaned and repaired and the infection is under control, he signs himself out against
medical advice (AMA) to return to his fifth-floor walk-up apartment, where he has a thriving
business dealing street drugs. He insists that, with his buddies to carry him up and down and
≤∫ curriculum for ethics committees

his girlfriend to help him with meals and activities of daily living (ADLs), he can manage just
fine. He acknowledges that his recovery might be better if he remained in the hospital longer
or if he came to the clinic regularly, but, if he is not home, his business will be picked up by
other dealers. He insists that he is willing to risk future infections, although he is confident
that ‘‘you guys will always get me back on my game.’’ Nevertheless, each time he returns, he
is in worse shape and it is harder to resolve his medical problems.

The Importance of Determining Capacity

Decisional capacity requires more than the ability to articulate choices. As discussed
in chapter 5, young children can be very vocal and sincere in expressing their wishes,
but their choices would not be considered thoughtful judgments. The obligation to
respect autonomy and the integrity of the informed consent process depend on the
patient’s ability to understand the facts and appreciate the consequences of treatment
options. The presumption is that adult patients have the requisite capacity and, ab-
sent contrary evidence, decisions about treatment and nontreatment defer to patient
wishes. Moreover, this deference usually extends to all capacitated decisions, including
those that providers may think reflect poor judgment or are not in the patient’s best
interest. Yet troubling and potentially harmful decisions, such as patient rejection of
recommended care, must be carefully explored because they may well reflect misunder-
standing and lack of trust, rather than informed and considered choices.

||| Mrs. Rodriguez is a ∏Ω-year-old woman transferred from a nursing home in a semicomatose
state and respiratory failure. She was admitted to the intensive care unit (ICU) and intubated
to provide ventilatory support. Her multiple medical problems include congestive heart
failure, non-insulin-dependent diabetes, and several prior episodes of pneumonia.
After several weeks, the care team recognized that Mrs. Rodriguez would not be able to
breathe without ventilatory assistance and recommended that a tracheotomy be done to
promote safety and comfort. Because she was still unresponsive, the procedure was explained
to her daughter, who provided consent. The next day, Mrs. Rodriguez unexpectedly became
more alert and responsive. The critical care resident expressed concern because he believed
the patient was indicating opposition to the tracheotomy.
The ear nose and throat (ENT) attending argued that the endotracheal tube made it im-
possible to determine what, if anything, the patient was trying to communicate and, in any
event, she did not have the capacity to make decisions about her care. He insisted that the
trach, which would be in the patient’s best interest, be performed in accordance with the
daughter’s consent. The critical care attending asked Mrs. Rodriguez a series of yes-no
questions that she could answer by nodding or shaking her head. Her nonverbal but con-
sistent responses, which indicated that she understood the purpose of the tracheotomy and
agreed that it should be performed, were considered a ratification of the consent provided by
her daughter.
 d e c i s i o n m a k i n g a n d d e c i s i o n a l c a p a c i t y i n a d u lt s ≤Ω

Would Mrs. Rodriguez’s capacity have been considered su≈cient for her to consent to the
tracheotomy without her daughter’s involvement? Why might a higher level of capacity be
required for her to refuse the procedure?

One useful strategy for approaching decisional capacity is a sliding scale, which
assesses the required level of capacity according to the seriousness of the decision. As
the risks associated with a decision increase, the level of capacity needed to consent to
or refuse the intervention should also increase. For example, a decision about whether
to go to physical therapy before or after lunch carries a low risk of harm. This decision
could safely be made by a patient with diminished capacity because the consequences
of either choice are relatively benign. In contrast, a decision about whether to undergo
a life-saving amputation or enroll in an experimental trial of chemotherapy requires
the ability to understand and weigh the significant benefits, burdens, and risks of the
proposed intervention. Asking a patient with uncertain capacity to take responsibility
for a choice this serious would abandon her to the consequences of her deficient deci-
sional ability. Clinically, the sliding scale provides heightened scrutiny when the po-
tential outcomes of decisions require clinicians to be confident that patients fully ap-
preciate the implications of their choices. Mrs. Rodriguez’s low level of capacity was
considered sufficient to ratify her daughter’s consent because she concurred with the
plan her care professionals and family agreed would benefit her. If she had refused the
recommended procedure, however, it is likely that further assessment of her decisional
capacity would have been indicated.
The danger in the sliding scale approach is that of paternalism, the tendency to treat
otherwise capable adults as though they were children in need of others to make deci-
sions for them. While it is not necessary that the family and care team agree with the
patient’s decision, choices considered irrational or harmful to the patient are likely to
be challenged or at least closely scrutinized to protect incapable and, therefore, vulner-
able patients from making decisions not in their best interest. The fact is, we only
question the capacity of people who do not agree with us. Think about it—when was
the last time you saw a capacity consult called to evaluate a patient who had just agreed
with the doctor?
Capacity assessments, therefore, require a conscious effort to look beyond the deci-
sion we would make for ourselves or even recommend for the patient. If we focus
exclusively on the content or the outcome of the decision rather than the decision-
making process, we risk disempowering people who make risky or idiosyncratic choices.
An important safeguard is assessing the decision in terms of how it is made, evaluating
the patient’s ability to manage the several skills required for capable decision making.
Likewise, it is necessary to distinguish questioning capacity and finding incapacity. While
treatment refusals or other questionable decisions may trigger a capacity assessment,
they do not automatically confirm incapacity.
≥≠ curriculum for ethics committees

Who Assesses Decisional Capacity?

Given the importance of assessing decision-making capacity, the desire for a precise
method of measurement is understandable. Unfortunately, it’s not that simple. Deci-
sional capacity is an index of patient ability to make decisions and, therefore, involves
cognitive processes. Nevertheless, its assessment requires more than a test of mental
acuity or a psychiatric exam. The Mini Mental Status Exam (MMSE), often used to
evaluate cognitive ability, is useful in gauging ‘‘orientation of the subject to person,
place, and time, attention span, immediate recall, short-term and long-term memory,
ability to perform simple calculations, and language skills’’ (Lo, 2000, pp. 84–85). The
MMSE is less helpful, however, in assessing an individual’s ability to understand, weigh
alternatives, and appreciate consequences—the skills required for capacitated decision
making. This evaluation is more effectively done through one or more discussions that
reveal the patient’s grasp of the decision’s context and implications.
Likewise, simply calling a psych consult does not get the job done. While psychiatric
consultation may be helpful in assessing decisional capacity, it is not always necessary
or sufficient. To be sure, psychiatric intervention can be invaluable in engaging patients
in discussion, eliciting and interpreting their concerns, and identifying mental illness,
cognitive impairments, and interpersonal conflicts that can mask or interfere with
decisional capacity. Even a skillful psychiatric consultation, however, captures only a
snapshot of the patient’s thinking at a specific moment rather than over time. Ulti-
mately, the clinicians who observe and interact with the patient day to day—especially
nurses, residents, and medical students—may be better positioned to evaluate the qual-
ity and consistency of the patient’s decision-making ability. For this reason, assessing
decisional capacity should be considered part of the clinical skill set of care profes-
sionals and the responsibility of the medical team. Reinforcing this aspect of the care-
giver role can be a valuable ethics committee function.

deciding for patients without capacity

Usually, health care decisions are made by capable patients with the advice and sup-
port of their caregivers and families. Frequently, however, treatment decisions must
be made for patients who lack the capacity to make decisions for themselves. These may
be persons who were formerly but are no longer capacitated or individuals, such as
newborns or the severely retarded, who never had an opportunity to form values or
preferences.
Making medical decisions for others raises a series of questions involving the pa-
tient’s clinical needs and treatment options, what is known of the patient’s care wishes,
and the appropriate delegation of decision-making authority. Answering these difficult
questions is often complicated by disagreements between and among the patient’s
family and care providers. Mediating these conflicts and facilitating decision making
 d e c i s i o n m a k i n g a n d d e c i s i o n a l c a p a c i t y i n a d u lt s ≥∞

for incapacitated patients are among the most frequent and effective interventions by
the ethics committee. The theory and skills important to clinical consultation are dis-
cussed at greater length in part II.

Standards of Decision Making

The standards of health care decision making rely on the patient’s voice as the
central and most authentic source. When that voice is temporarily or permanently
unavailable, those who act on behalf of the patient have only indirect access to her
wishes and values. Three standards are customarily invoked in an attempt to get as close
as possible to what would be the patient’s decision, each concentric circle drawing on
less direct information from the patient.

≤ Prior explicit articulation is the previous expression of a capacitated person’s

wishes, the most reliable information about her preferences. ‘‘What do we know
about this person’s wishes based on what she has said or written?’’
≤ Substituted judgment is a decision by others based on the formerly capacitated
person’s inferred wishes. ‘‘Knowing what we know about this person’s behavior,
values, and prior decisions, what do we think she would want in these
circumstances?’’
≤ Best interest standard is used to arrive at a judgment based on what a reasonable
person in the patient’s situation would want. This standard is used when the
incapacitated person never had or made known treatment wishes and her
preferences cannot be inferred. Others weigh the benefits and burdens to the
patient of a proposed intervention or care plan. ‘‘What do we believe would best
promote this person’s well-being in these circumstances?’’

Decision Making for the Formerly Capacitated

The notion that only the explicit statement of a capable patient can inform treat-
ment decisions has proved to be double-edged—both a protection of the patient’s right
to consent or refuse and a barrier to decision making when the patient’s wishes are
unknown or inaccessible. Among the clinical setting’s greatest challenges is the patient
who was formerly but is no longer capable and/or communicative, making it difficult
to determine or honor her wishes. In this category are the elderly demented and pa-
tients of any age with terminal illness or irreversible injury that has impaired their
decision-making ability. In response to the needs of the formerly capacitated, two ap-
proaches that invoke the three decision-making standards have developed—advance
directives and surrogate decision making.

Advance Directives

||| Mrs. Stern is a π∂-year-old woman admitted from home for surgical repair of a hip fracture.
Although she is in the early stages of dementia and has mild coronary artery disease, she has
≥≤ curriculum for ethics committees

been healthy and fairly independent until her recent fall. She has lived alone since her hus-
band’s death three years ago, but her daughter, Mrs. Keller, lives nearby and they either visit
or speak daily.
On admission, despite her considerable discomfort, Mrs. Stern was alert, understood her
medical condition, and was able to provide consent for the surgery. During the postoperative
period, however, she has been increasingly agitated and confused. When recent blood tests
indicated anemia, she was unable to discuss the need for a transfusion. She asked that the
doctors talk to her daughter, who provided the necessary consent.
Mrs. Stern is scheduled to be discharged to a nursing home for rehabilitation in prep-
aration for her eventual return home. She is expected to make a good recovery from her
surgery and should be able to resume her normal activities with some assistance. Her doctors
anticipate that, once she is in familiar surroundings, she will be less agitated and confused.
Because her dementia is likely to progress, however, she will find it increasingly di≈cult to
make independent decisions, including those related to her health care. For that reason, the
care team is encouraging the execution of an advance directive that will enable care decisions
to be made on her behalf when she is no longer able to make them herself.
If Mrs. Stern is determined to lack the capacity to make care decisions, is she capable of
executing an advance directive? Would di√erent levels of capacity be required to execute a
living will and appoint a health care proxy agent?

Advance directives are legal instruments intended to secure an individual’s ability to

set out prospective instructions regarding health care. Conceived during the 1970s,
they responded to the concern that patients who were unable to speak for themselves
might be subjected to unwanted medical interventions, especially at the end of life. The
1990 federal Patient Self-Determination Act (PSDA) requires any health care facility
receiving federal funds to offer patients the opportunity to execute advance directives
and assistance in doing so. Although all fifty states have statutory and/or case law
governing advance directives and all states honor them, their standards and restrictions
differ. While advance directives are helpful whenever substitute decision making is
required, they are most often invoked in making decisions at the end of life. For that
reason, they are discussed further in chapter 6.
Advance directives commonly come in two varieties—living wills and health care
proxy appointments. In different ways, they provide direct expression of the patient’s
wishes, enabling caregivers to rely on the most immediate of the decision-making
standards. The living will is a written set of value-neutral instructions about the particu-
lar medical, surgical, or diagnostic interventions the individual does or does not want
under particular circumstances, usually at the end of life. The structure of the document
generally has a trigger phrase, such as, ‘‘If I am in an irreversible coma, . . .’’ or ‘‘If I am
unable to recognize or relate to my loved ones and my doctors say that I will not
recover, . . .’’ followed by the list of instructions related to the specified circumstances.
Patient wishes may also be communicated orally when the patient is unable to
 d e c i s i o n m a k i n g a n d d e c i s i o n a l c a p a c i t y i n a d u lt s ≥≥

execute a written document. In these instances, the patient’s verbally expressed instruc-
tions can be documented by a health care provider or other individual. If properly
documented and witnessed, these statements are considered formal advance directives
in several states.
Because the living will presents the explicit articulation of the patient’s prior capaci-
tated wishes, it can provide helpful guidance to family and clinicians about what she
would want in the current circumstances. It is significantly limited by the fact that it is a
static piece of paper written when the person could not accurately anticipate her future
medical condition. In addition, these documents do not always mean what they say.
The person whose living will says,‘‘ I don’t ever want to be on a respirator’’ probably
does not mean, ‘‘I don’t want to be on a respirator for four hours if it gives me ten more
years on the tennis court.’’ What she probably means is, ‘‘I don’t want to live out the rest
of my life on a respirator.’’ But living wills typically do not provide for that kind of
nuance. Finally, this type of advance directive usually refers only to end-of-life care. The
result is a set of instructions that reflect what the patient believed and tried to communi-
cate at a particular time about what she thought she would want under different circum-
stances at a later time. Because of their limitations, living wills are most useful for
someone who does not have trusted friends or family to make decisions in the event of
her incapacity.
The preferred advance directive is the health care proxy, sometimes called a durable
power of attorney for health care decision making. This document enables a capable in-
dividual to legally appoint another person—an agent—to make health care decisions on
her behalf after capacity has been lost. The agent is authorized to make any and all health
care decisions the individual would make, not just those about end-of-life treatment.
The health care proxy is recommended over the living will because it authorizes
decision making in the event of temporary or permanent incapacity and permits greater
flexibility in responding to unanticipated or rapidly changing medical conditions. The
agent is generally required to honor the patient’s previously expressed wishes in making
care decisions. If those instructions do not apply to or are inconsistent with the patient’s
current health needs, however, the agent is empowered to use his knowledge of the
patient’s wishes, values, and decision history to exercise substituted judgment in mak-
ing choices that promote the patient’s best interest. This scope of authority presupposes
a patient-proxy relationship characterized by trust, familiarity with the patient’s wishes
and values, and the agent’s willingness to exercise judgment and make hard decisions in
the patient’s interest.
Mrs. Stern is a good example of a patient who lacks the capacity to make health care
decisions, yet is capable of appointing a trusted person to make decisions for her. Her
current illness and hospitalization have exacerbated the agitation and confusion of her
early-stage dementia, making it difficult or impossible for her to understand and de-
cide about her medical treatment adequately. Moreover, she does not want to assume
this responsibility, preferring to delegate decision-making authority to her daughter.
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the flood, which is left nearly dry at the ebb. About half a mile from
Port Madoc, upon a rising ground, stands a handsome house, once
the property, though not the principal residence, of the great
speculator, which is now inhabited by Mr. Williams, a solicitor, and
agent to the creditors of the deceased. Proceeding along the road,
in a short time the tourist obtains a peep at the little town of
Tremadoc; but before reaching it he perceives the church, an
elegant building, with a tower and lofty spire, which forms a
principal object in the landscape. The archway, under which the
church is approached, is a beautiful specimen of workmanship, and
does equal credit to the taste of the founder and execution of the
builder. Divine service is read here in the English language every
Sunday, which is a great accommodation to the English families
residing in the neighbourhood, as there is no other church within
twenty miles where it is so performed.

TREMADOC
or the town of Madoc, is built quadrangularly, and in the centre of
the square is a column with a pedestal, round which are twelve
steps. On the eastern side is a commodious market house, above
which are the assembly rooms. A market is held here on Fridays,
and the Barmouth and Carnaervon coach passes through three times
a-week.
Having refreshed ourselves with a luncheon of salad and cold meat,
we three trudged off together, in spite of wind and weather, which
threatened a speedy commencement of hostilities. Large masses of
vapoury clouds were driven above our heads; the swallows skimmed
the surface of the river, and brushed the standing corn with their
swift wings, as they flew along in the pursuit of their prey; and the
wind blew loud and shrilly, as in the month of November. At a short
distance from the town, upon the Beddgelert road, is a lofty hill, the
base of which is planted with fir trees; through which a path winds
up to the mansion of Tan-yr-allt, the late beautiful residence of Mr.
Madocks. We had not proceeded far, when we were compelled to
seek shelter in a hollow, of which there are many at the feet of the
enormous precipices which overhang the road.
The transient storm having passed away, and sunshine once more
lighting up the valley, we again pushed forward. The Merionethshire
mountains upon the right, decked in their countless hues of rock and
heather, over which the departing storm swept with its rolling
clouds, in dark magnificence, formed a noble subject for the artist’s
pencil. The road is elevated above the meadows which enrich the
centre of the vale; and the river, which flows through them, having
risen above its banks and spread itself over a considerable tract of
country, resembled an extensive lake.
About half way between Tremadoc and Beddgelert, is a small dingle
upon the left of the road, with a neat lodge at the entrance, and a
path leading up to the shrubbery, beneath which a mountain stream
flows rapidly, and empties itself into the Rhine. The path leads up to
the residence of Capt. Parry. As we proceeded, numerous falls
dashed down the mountains and plunging into hollows underneath
the road, emerged again upon the other side. We were several
times forced to take shelter from the heavy showers under fallen
blocks of rock; and once as the storm abated, and we looked
anxiously out to see if it was clear enough to pursue our journey, a
glorious rainbow, stretching across the valley, its points resting upon
the mountains on either side, struck even my snow-models of men
with something like sensibility; for as they crept out of their
sheltering rock, they observed with infantine simplicity, “Well, really
that’s very pretty.” We now proceeded at a rapid pace, and the river
became more deep and narrow, and the circling eddies, as they
floated down the stream, announced to us that we were
approaching the fall of a great body of water, when suddenly—whizz,
whirr, clash, splash, dash, astounding and astonishing—

ABER GLAS LLYNN,

with all its world of horrors, burst at once upon our view. I felt a
tremulous sensation within me; a contraction of the muscles of my
throat; an hysterical sob, and a desire to weep. I stood stone still;
while my edifying companions pursued their way without making a
single observation. I halted upon the centre of the bridge, and gave
vent to my feelings in pencilling down the following

LINES
WRITTEN ON THE BRIDGE AT ABER GLAS LLYNN.

Thou of the stormy soul, who left behind

The love of sunny skies and smiling vales,
With thy fresh boyhood; thou upon whose brow
Stern care hath written gloom, and worldly wrongs
Made darksome; hither bend thy leaden steps,
And find a home here in this wild abyss!—
Abode congenial to thy lightless mind.
Ye black huge rocks, drear, mountainous, and stern,
First-born of chaos, everlasting piles
And monuments of the creation—hail!
Around your heads the thunder rolls in vain,
And the fierce lightnings from your summits bare
Turn harmless. Frown, frown on, ye giants stern,
 Majestic emblems of eternity!
The torrents are your tongues, and with their roar
Talk of your dignity for ever. Hail!
White foaming, thundering, falls the boiling flood;
Rocks clash, and echo mocks the horrid din,
While man appalled, stands breathless, in amaze,
And, filled with awe, exalts his thoughts to Him,
Who was, who is, and aye must be supreme!

Just above the bridge is a semicircular rock, which forms a salmon-

leap, over which the salmon, at spawning time, first lodge
themselves at the height of five or six yards. Proceeding through
the pass, at every step new wonders met the eye. The late heavy
rains had swollen the mountain waterfalls, and caused a terrific
torrent to roar and struggle through a narrow channel; for the
mountains, forming this southern end of the vale, approach so near
to each other, that they only afford a contracted flow for the river,
and a narrow road, while their rocky sides rise so perpendicularly,
that their summits are scarcely farther distant from each other than
their foundations. The rushing river was a pure sheet of white;
furious, uncontrollable; nothing but the immense blocks riven from
the mountain’s craggy sides could withstand its dreadful
impetuosity. A few stunted fir and larch trees at the commencement
of the pass were seen starting from the dark clefts upon either side,
which threw a deeper shade upon this awful valley.
Cradock calls this pass “the noblest specimen of the finely horrid the
eye can possibly behold. The poet,” he continues, “has not
described, nor the painter pictured so gloomy a retreat. ’Tis the last
approach to the mansion of Pluto, through the regions of Despair.” I
could have stopped for hours to admire this splendid example of the
sublimity of Nature, but time pressed, so I pushed on to Beddgelert
which is not more than a mile and a half from the bridge. A solitary
mountain ash which grows about half way up the pass, is the sole
bright thing in this abode of terror, and looks like Beauty in
desolation. Emerging from the pass there is a stone which is called
the chair of Rhys Gôch o’r’ Ryri; a famous mountain bard who lived
in the time of Owen Glyndwr. He resided at the entrance into the
Traeth Mawr Sands, from whence he used to walk, and sitting upon
this stone compose his poems. He died in 1420, at the advanced
age of 120 years; he was a gentleman of property, and was buried in
the ancient priory at

BEDDGELERT.
Some are of opinion that this word should be written Celert or Cilert,
Bedd-Cilert, or Cilert’s grave; supposing that a monk or saint of that
name was buried here. Another celebrated bard was entombed at
this place, named Daffydd Nanmor, who died about the year 1460.
The Goat is an excellent inn, and every attention the traveller can
desire is paid with the greatest celerity. Twenty post horses are kept
at this inn for travellers, and eight or ten ponys for the
accommodation of those visitors who wish to ascend Snowdon with
ease and safety. [240]
At nine o’clock, I strolled from the inn to the bridge, where I was
joined by a peasant, who, by his appearance, promised to be
communicative. It was a lovely evening; there was no moon, but
the clear sky displayed its burning host, in beautiful array. No breath
of air disturbed the silent slumbers of the peaceful woods. The lull
of rippling waters alone struck upon the ear, yielding a solemn tone
like the deep swell of the organ, breaking upon the deepest solitude.
In such a situation how indescribable is the feeling which takes
possession of us! What language can express, what tongue can
utter it? My very breathing seemed to disturb the excessive
sweetness of nature’s melody.
“This is a very pretty place, sir,” said the peasant, interrupting my
reverie.
“It is indeed,” I replied.
“I suppose, sir, you’ve been to visit the grave of Gelert, Llewellyn’s
hound?”
“I have. Do you believe the legend?”
“Indeed, sir, I do,” said he with a sigh; “but I never thought a man
could feel so much for the death of a brute, until last year—hai
how!”
This observation made me inquisitive to know what had so suddenly
changed his opinions. “What has caused you, my friend, to believe
in a legend so suddenly, which you never gave any credence to
before?”
“Why sir, I’ll tell you; you must know that I had a favourite pointer
bitch, Truan Bac. Oh, she was the beautifullest creature you ever
saw. She was the pride of the country; and gentlemen would come
to me and say, ‘William, will you lend me your little bitch to go a
shooting on the mountains—only for a day? Because you see, sir,
there was not her equal in all Wales, for a single dog; ay, and she’d
back as staunch as any on ’em, and a better retriever never went
into a field. Such a nose! ah! poor wench; I never knew thy equal!
You must think, sir, I was very loath to let her go without me, for I
bred her, and broke her in—though very little breaking she wanted;
—and you know, sir, a good dog is soon spoilt by a bad sportsman,
and the creatures be as fond of a good shot, as he be fond of
shooting to a good dog. No day was too long for her when the
scent lay. The motion of your hand was enough for her; to the right,
or left, or take the fences. She’d never baulk her game, or make a
false point; if the birds had just gone off, you might know she was
doubtful by a leetle motion in her tail. But, if she stood stiff and
staunch, you might bet a guinea to a mushroom that there was
game before her, and you’d nothing to do but to go up and take your
shot. Down she was to charge, and, if you bade her, she would
bring your bird without ruffling a feather. Well, sir, the beginning of
last August unfortunately she had a litter of pups. ’Twas a cross
breed, ysywaith!—and I got the butcher’s boy to destroy them,
which he did, and buried them in the muck heap, at the back of the
stable. From that time, she would never stir from her bed, that was
under the manger. My dame took her her food as usual, and placed
it just inside the stable door. My little boy, Billy, went next day, with
a mess of potatoes and barley meal, but told his mother that Rose
had’nt eat up her yesterday’s mess. Ah! she cried, she’ll eat it when
she’s hungry, I warrant her. Billy went next evening, but her victuals
were untouched, and, when he went to coax her, she growled at
him, and showed her teeth—a thing she never in her life had done
before to any living being; so he was frightened, and told me of it
next morning, and I went to the stable to see her. Her meat was all
dried up in the tub, and, when I went to her, she seemed nothing
but skin and bones. I called her Rose! poor Rose! she slowly raised
up her head, opened her bloodshot eyes, and moaned so piteously!
I thought she was dying. I held her a little milk; she just moistened
her tongue, and gave one wag of her tail, as much as to say, thank
you, master; and her head dropt again, and her eyes closed. I knew
’twas four days since she had eaten any thing. I put some food by
her, and went to my work. When I returned at night, the first thing
I did was to go into the stable, where I found the food untouched
and my poor little bitch dead, cold and stiff. I shall never forget it—
wela! wela!—I drew her from under the manger, and what do you
think, sir? I’ll be shot, if there warn’t her five little pups that the
butcher’s boy had kill’d!—she had dug them out of the dung-hill one
by one, and laid them in her kennel, and, fearing they would be
taken from her again she concealed them with her body, and died
through starvation, rather than give ’em up! Wasn’t that nature,
sir? I’m almost ashamed to say it; but indeed, sir, I wiped away
tears from my cheeks, when I saw that sight. I took her up in my
arms, and buried her and her young litter in the same grave; and
since that time I never refuse my belief to the stories I hear of
surprising instances of devoted affection, gratitude, and instinct, in
any of her race. Wela! wela!
“But sir, if you should come this way on your return, and should
want a day or two’s good sport on the mountains, I’ve got a dog
that’s second to none in the country, and I shall be proud to serve
you.”
I promised, if I should find it convenient to return by the first of
September, to engage his dog, if not previously hired; and bidding
him follow me to the Goat, I ordered for him a tumbler of whiskey-
punch, which spirit is as much esteemed in Snowdonia as in the
mountains of Wicklow.
 CHAPTER IX.

Departure from Beddgelert—Vortigern’s Hill—Snowdon—Llynn

Gwynant—Lines written upon Llynn Gwynant—Gwrydd—Public
Houses—Lake Fishing—A Night Adventure—Pass of Llanberis—
Legend of the Giant’s Night-Cap—The Lakes—The Castle of
Dolbadarn and Legend—View of the Lakes.

“Oh, who hath stood on Snowdon’s side,

And glanced o’er Mona’s virgin pride;
And gazed on fatal Moel y don,
But thought of those once there undone?
When Saxons, and their foreign band,
Were crushed by the sons of the mountain land.”
T. J. Llewelyn Grichard.

On the following morning I quitted the inn, where every attention

was shewn that a traveller could desire, and proceeded over the Ivy
bridge, through which the Gwynant flowed, deep and smooth as
glass, without an obstruction to ruffle its clear waters, that glided
along, kissing its verdant banks, like the stream of a happy life.
Quietude reigned in this region uninterrupted. About half a mile
from Beddgelert, a rocky eminence projects into the road, called
Vortigern’s Hill, or Dinas Emrys, a magician, who was sent for to this
place by Vortigern, when he found himself hated by his subjects,
and fled from their just anger to this secluded spot. Passing this
memorable place, a round clump of rock attracts the eye, rising as it
were in the centre of the valley, and called Moel Wynn. Looking
backward, Moel Hebog, the Hawk hill, rises majestically and closes
up the entrance to Beddgelert. Moel Shebbod towers in front, and,
as we pursued our delightful path, about two miles and a half from
Beddgelert, an opening of the hills upon the left displayed a deep
gorge, and the base of Snowdon, whose high peak, rising in the
unclouded skies, held up the holy symbol of Christianity, as in
adoration of the Creator. At length, I reached Llynn Dinas, a lake of
about three quarters of a mile in extent, through which the Gwynant
runs; it is surrounded by lofty mountains of a deeper tint than is
usually seen upon the Welsh hills. A beautifully situated cottage
here at the far end of the lake, belonging to Mr. Sampson, nestles
among the protecting woods, and forms a delightful object. The
river which feeds the lake, winds through the verdant and undulating
grounds which form a miniature park, between the cottage and the
lake. Following up the course of the stream, I left Llynn Dinas
behind me, and proceeded by a gradual ascent through the most
delightful scenery I ever beheld, until I caught glimpses through the
plantations of

LLYNN GWYNANT,
and after a while beheld it stretching beneath me upon my left
hand. The valley forms a bowl among the hills. The bottom is a
small grassy plain, dotted with trees, which has obtained the
appellation of Beauty sleeping in the lap of Terror. The mountains
that surround the vale, have a wild and rugged appearance. As I
proceeded along the road towards the head of the valley, a horn was
sounded from the mountain, and I perceived a Welsh girl standing
upon a projecting eminence: bare headed and bare footed, was this
nymph of Cambria; her cheeks were swelled out with her
occupation, and she looked like a female Boreas, bursting with the
wind she was sending forth by degrees to alarm the world.
She eyed me with glances of curiosity all the while, and I thought
she could perhaps give me some information about the valley, which
might be interesting; so quitting the direct road, I scrambled up the
hill side, and asked her the meaning of her sounding the horn so
loudly? But she either did not, or would not, understand me; and
after vainly endeavouring to extract any thing from her, I quietly sat
myself down, delighted by the splendid view beneath me, and gave
vent to my feelings in the following lines:

LLYNN GWYNANT.
Llynn Gwynant, Llynn Gwynant! how bless’d should I be,
When the winter of life crowns my temples with snow,
To rest on thy margin, with her who loves me,
And children whose love gathers strength as they grow.
There are mountains whose peaks rise more lofty by far,
And valleys more spacious and fertile to view,
But of all the high hills and green glens that there are,
Llynn Gwynant give me, with its waters of blue.
Lynn Gwynant, Lynn Gwynant! I bid thee farewell,
Where peace in the beauty of solitude glows,
Again in the cold hearted city to dwell,
And pine for the calm of thy blissful repose.
Farewell to the lake with the surface of glass,
Brown heath and blue mountains—abode of the free!
This heart, like the flood from the high Ffynnon Las, [250]
Will leap from its gloom to find rapture in thee.

Having nearly reached the extremity of this valley, I gazed, from my

elevated situation, upon the dark and perpendicular rocks on the
opposite side; and towering in the air immediately over the centre of
the valley was an eagle with expanded wings, apparently
motionless. Presently it rose a little higher, but without the slightest
visible exertion, then stooped again, mounted once more, and, as
fast as the eye could follow, swept round the huge buttresses of
sharp ridged cliffs, that hang over the entrance of the pass of
Llanberis.
As Llynn Gwynant is gradually shut out from the lingering gaze of
the traveller, (who it may be said during the whole of the ascent,
should turn his eyes behind him), and he at length looks forward in
the direction of Llanberris, a new scene of grandeur bursts upon
him. He has left beauty behind in its loveliest form;—but the
sublime and wonderful now call forth all the springs of admiration.

Snowdon again appears in all his splendor! Mountains that by

comparison looked like hillocks rise round his regal waist, in groups
numerous and picturesque. The deep black crags that form the
western side of the valley make a magnificent fore-ground, and open
here like nature’s gates, to disclose the secrets of her bosom.
The accompanying etching, gives an admirable idea of this imposing
scene. About a mile from hence is a place called Gwrydd, where
there is a small public house, with a sign signifying nothing. Here I
resolved to “rough it” for a day, intending to fish the lakes, situated
immediately above this spot, as nature’s cisterns to water the
pleasant valleys.
The public house possesses a small parlour, carpetted, with half a
dozen hair-bottomed chairs, and a mahogany table. A silent but
most importunate monitor urged me to discover what food this
mountain chalet could produce. “Eggs and bacon,” was the
expected reply to my question; and I soon had the pleasure of
seeing this humble, but most grateful, fare placed before me, and in
spite of the indifferent style of the cooking, I partook of it eagerly,
having that incomparable sauce “a good appetite.”
After I had repaired my broken rod, I ascended the mountain at the
back of the house, and arrived at a large oval lake, in which the
black and sterile rocks that form inaccessible ramparts on one side
are reflected in its generally unruffled surface. The scene is wild and
desolate, such as Despair herself would select for her abode. There
are plenty of fish in this lake, but they are all small and extremely
shy. I remained upon its margin until the shadows of night gave me
warning to attend to my safety, and make the best of my way to my
lodging, where I speedily ascended by a ladder-like staircase to a
kind of cock-loft which was divided into two compartments, one for
the accommodation of the family, man, wife, children and servants,
the other fitted up for travellers. Sleep soon overtook me, and I
should have continued to sleep, I have no doubt, until breakfast
time, had I not been awakened by a trifling accident.

“At the mid hour of night, when stars were weeping,”

and ghosts of the mighty walk upon the hills, with a variety of other
interesting objects that poets and nursery maids have described
infinitely better than I can pretend to do, I was visited by a dream in
which the ghost of a lobster popped his head out of a salad bowl,
and demanded upon what authority I had presumed to make mince-
meat of his body, when a loud crash roused me from my slumber,
and I found myself with my knees, doubled up to my chin upon the
floor; the bedstead having broken in the middle, and deposited me
in this unenviable position. I need not say that for the remaining
part of the night, I was wholly left to waking reveries, and
uncontrollable desires for the blessings of daylight, which at last
greeted my longing eyes, and hurrying on my clothes, I descended
and walked forth to scent the morning air, in the direction of
Llanberris. The mists rolled like troubled lakes in the valleys, and
the black bleak rocks looked cheerless and forbidding. The breeze
was keen and piercing, and I started at a round pace to get myself
warm by exercise. Having reached the summit of the roadway, I
plunged at once into the pass of Llanberis, wild and gloomy. The
precipices on my left looked truly terrible, like the shadow of death
wrapped in a vapoury shroud. This pass is above four miles in
length, and is a fine specimen of rugged grandeur. Not a single tree
enlivens with its verdure this tremendous chasm. Range above
range of rocks tower over the traveller upon either side, bearing
various tints of black, brown, green and purple, according to the
disposition of the sun’s rays, and the distances of the ponderous
masses. The rocks on both sides are nearly perpendicular; and,
about two miles down the pass, the tourist will perceive some
prodigious masses of rock upon his right hand that have fallen from
the overhanging cliffs, which, when he pauses to look upon, will
strike a feeling of terror into his heart, as he inwardly exclaims,
“could any one have witnessed the descent of this tremendous
mass?” The accompanying sketch gives a most accurate description.
I stood contemplating this scene, and suddenly a wild shout roused
me from my reverie.
“Halloo, halloo! over—over—over!”
I turned my eyes up the mountain to my left, and there saw a
shepherd, forming a speaking trumpet with his hands, and shouting
to a dog (of what kind heaven knows, but in my opinion a thorough
bred mongrel), and the fleet animal was dashing down the hill in the
direction to where I stood. In an instant, he had passed me. It was
a perfect nondescript! a thing that looked like the offspring of a
French poodle and a Welsh goat; such a mass of hair, rags and wool,
I never before beheld. I sat watching his progress, which was
exceedingly rapid, and as I marked him, as he scrambled up the
opposite craggs, I could not help admiring the instinct (or training)
of the wretched looking animal. Sheep after sheep did it pursue,
and drive down into the hollow from which they had strayed—some
of them leading him a chase (of no enviable description) nearly to
the summit of the barren mountain; but, with untired feet and
unceasing bark, he tracked and outstripped them all, and, in
conclusion, forced them into the bounds allotted for them at the
bottom of the vale, where a scanty supply of grass served for them
to browse upon. This duty done, the faithful animal left them, and
again crossing the valley, rushed by me and rejoined his master.
I was about to pursue my journey, when I perceived a man fishing in
the stream beneath. I descended to learn what sport he had met
with, and found he had not been fortunate. I asked him if he
remembered the time, when the huge rock, I have before noticed,
fell from the brow of the precipice?
“It would be hard for me to do that, sir,” said the fisherman, who
laying his rod upon the ground, seemed desirous of saying
something more upon the subject.
“Is there any legend about it?” I inquired.
“Indeed, sir, there is,” replied he; “and, if you’ll only stop till I put up
my tackle, as I suppose you’re going to Llanberis, I’ll tell you as
much as I know about the matter.”
I remarked, as he spoke, an expression of countenance that told me
he thought tale telling might prove more profitable than trout
fishing; but I readily agreed to his proposition, and in a few minutes
we were trudging, side by side, along the road towards the village.
I dare say, sir, you havn’t come so far, without seeing Cader Idris, or
the Chair of Idris, as it is called, for Idris Gawr you must know, sir,
was a famous giant of his day, but whether you have or not, he had
a brother, sir, as I’ve been told, Dyn Ddu o’r’ Craig, which means the
black man of the craig, who had a very fine castle upon the top of
that precipice, at the foot of which you noticed those large pieces of
rock. Well, sir, he never loved his brother, but he had a great liking
for his niece; one of the prettiest girls, ’twas thought, ever seen in
this part of the country; but she was to be married to a fine young
hero, one of the knights of King Arthur’s round table, who had done
wonders for her sake, and made all the world confess Merch Idris
was the most beautiful creature in the world.
Well, sir, she was mortally afraid of her uncle, for he had a head as
big as the top of Snowdon, and a forest of whiskers, and a beard
that a man might take a day’s shooting in, without tearing his coat
with the branches; so that he never could be conquered, having so
much game in him, ha! ha! ha!—You’ll excuse me, sir, but what a
comfortable thing it must be for a man to catch birds enough in his
whiskers, to serve him for dinner!—Well, sir, it happened that Merch
Idris was benighted between Capel Curig and her father’s castle,
and, as she had only one attendant, and he was a poor weak
coward, you may easily suppose she was for getting home as fast as
possible; but a storm came on, and the night closed round them,
and by some means or other they lost their way; for you know, sir,
at that time there were no turnpike roads, as there are now, and
they wandered about upon their merlins until nightfall, without
knowing what part of the world they were in; when all of a sudden,
the servant’s beast, who went first, sank into a bog, up to his neck;
and his rider began to roar for help so loudly, that the lady’s animal
took fright, set off at full speed, and never stopped until they came
to the gates of a large castle. The night was so dark, she couldn’t
make out whether she had ever seen it before or not; however, she
thought it would be better to blow the horn at the gate, and ask for
shelter, than wander about the mountains all night, at the risk of
breaking her neck, or being smothered in a quagmire. So she blew
a blast (for at that time o’ day every great lady played upon some
instrument or other, and this young lady surpassed all others upon
the horn) so loud, that presently a warden called out from the top of
a tower. “Who’s there?” Well, she mustered up courage enough to
say, she was “A lady in great distress.”
“Oho!” says the warden, and off he set. Now the young lady
scarcely knew how to take the salutation of the warden, whether it
was meant friendly or otherwise. She had not pondered long upon
those mysterious sounds, when the portcullis was raised, and the
first living thing she saw was her tremendous uncle Dyn Ddu o’r’
Craig! with a hundred torches behind him, ready to welcome her into
his castle. You may be sure she was not much pleased at his
presence, and regretted that she had not held out till the morning.
But she had gone too far, and so she went in, and the iron grating
was closed again, with a sound that struck terror into her pretty
heart. Now it so happened that Sir Tristram (that was the name of
her lover) was staying with her father, Idris Gawr; and they were
both of them puzzled what to think when Merch Idris didn’t reach
home at the time they expected her. So the knight mounted his
charger and gallopped off one way, and Idris took up his club and
walked off the other, to search for her. All this time, the villain of an
uncle was trying to wheedle the fair maid, his niece, to marry him;
and, when he found her deaf to his monstrous wishes, he flew into a
mighty passion, and dragged her to the top of the precipice, by the
hair of her head, and swore, in a most unchristian manner, that he
would pitch her over, if she didn’t consent.
But just as he was about to put his threat into execution, he heard a
horse at full gallop behind him; so he turned round just time enough
to avoid the slashing sword of Sir Tristram, who made a determined
cut at his head, that would have taken it clean off, if he hadn’t have
ducked. Well, he was fain to let go the lady to save himself from the
fury of the knight, although he didn’t think much of him. But he
pulled up a tree, and he made a mighty blow at him, which the
knight, by the blessing of providence, escaped; but the horse wasn’t
so fortunate, for it fell upon the poor creature’s head, and smashed
it to atoms. Well, the knight began to think the giant “too much of a
horse” for him; and so he blew three notes upon his bugle, which
was the appointed signal between him and Idris, and no sooner had
he done so, than it was answered.
“And now,” said Sir Tristram, “my fine fellow, you’ll have your match
in a minute; and sure enough, as he spoke, Dyn Ddu o’r’ Craig saw
his brother running at the rate of half a mile a stride. Well, he was
greatly perplexed what to do; but he thought he had better get into
the castle. So, he took Merch Idris under his left arm, and kept the
knight off with the roots of the tree. However, he couldn’t reach the
gates in time.
“And now,” says Idris to his brother, “you ruffian,” says he, “what are
you going to do with my daughter? Put her down, or I’ll smash you,
as I do this tower!” and with that he hit a turret of the castle, and it
flew about in all directions. “Why then,” says the other, “I think I
can do as great a feat as that.” So he knocked the other turret on
the head, and drove it clean down into the earth, so that not a brick
of it was seen above ground! Well, with that the two giants began
to bang each other with their cudgels, till they were black and blue,
while Sir Tristram and the lady ran off to Cader Idris, as fast as they
could, to get out of harm’s way.
Idris was the stronger giant of the two, and after three hours’ hard
fighting, you wouldn’t have known them for human beings; but Idris
having got Dyn with his back to the precipice, (where he threatened
to throw the poor young lady over) hit him, with all his force, such a
blow on the nose as made him stagger back and roll right over the
edge of the craig. Well, he rolled and he rolled, till he got to the
place where you were standing, and then he stopped; but he was
quite dead. Then the famous Idris, seeing his brother lie like a huge
bundle of rags, without motion, by the side of the stream, tore off a
large piece from the top of the mountain, and throwing it with great
force, it lit full upon the giant as he lay, while his conqueror roared
out, in a voice that was heard at Carnaervon,—“Good rest to you,
brother Dyn! there’s a nightcap for you!”
And ever since, that piece of rock has been called “the Giant’s
Nightcap.”
We soon obtained a view of the lakes that spread themselves before
us—viz.: Lyn Peris and Lyn Padarn, with the romantic castle of
Dolbadarn upon its rocky promontory. On issuing from a pass on
our left, as my companion informed me, is a valuable copper mine,
and a stream of water conveyed over the road, by the aid of a
wooden conduit, into the lake, which stream, he said, was for the
use of the mine.
At length, I reached the inn, called Victoria, and satisfying my
companion with a gratuity which was more profitable than fishing, I
entered and ordered breakfast, and procured an admittance to the
castle of Dolbadarn. This ancient fortress is supposed to have been
built by one Padarn Beisrydd ap Idwal, for the purpose of guarding
the mountain pass which I had just quitted. A single round tower is
all that remains of the castle, although traces are left of a much
more extensive building. Here Owen Goch was imprisoned twenty
years by his brother Llewellyn, the last Prince of Wales of the British
line; and an ode is still extant, written by Howel-Voel, wherein his
captivity is affectionately lamented.
The view from the castle is truly sublime, comprising the two lakes,
and the tremendous range of mountains, that seem to admit no
outlet from the vale. But the most beautiful prospect is from the
lake in front of the promontory on which the castle stands, and is
reflected in the smooth waters beneath, while the majestic Snowdon
towers in the distance.
In the twelfth century, it is said there lived a celebrated beauty,
whose father was the lord of this castle, and of whom something like
the following legend is related:

LEGEND OF DOLBADARN.
Margaret of Dolbadarn was one of the fairest damsels of whom
Cambria ever boasted at court or tourney;—fair without vanity,
highborn without ostentation, she exhibited the simplicity of nobility.
Like others of her rank, she had many knights who owned her
power, and panted to put lance in rest for the peerless Margaret; but
in the number there was but one whom her eye followed through
the glittering throng, and whose approach made her heart beat, and
the mounting blood turn the delicate pink upon her cheek to
crimson; and William of Montgomery was the happy knight.
But her father had other views, and Hector of March-lyn-Mawr was
proposed by him to be her husband—a youth of noble presence, but
ignoble mind. His lands extended far and near, and skirted those of
the Lord of Dolbadarn, who was, from that circumstance, doubly
anxious to have the union consummated.
He was, however, a tender guardian; he loved his daughter, and was
by her loved tenderly in return. Both knights had free access to
Margaret, and both were anxious to deserve her favour. William was
young, valiant, handsome, and honest; Hector was bold, gloomy,
uncourtly and subtle. The Baron saw the decided preference his
daughter gave to William of Montgomery, and grieved in his heart
that it was not bestowed upon his more wealthy rival. He therefore
resolved to put a proposal to his daughter, which was, that at the
ensuing tournament to be given at his castle, the knights should
prove their skill upon each other, and that he who was proclaimed
the most accomplished master of his weapons, should receive her
hand as the reward. For, though he was desirous of an alliance with
the wealthy and powerful house of March Lyn Mawr, he was by no
means insensible to the merits of Montgomery, whose name stood
high in the lists of chivalry, and whose engaging manners won
friends for him wherever he appeared. With a heavy heart did
Margaret submit to the proposal of her father, although a feeling of
confidence within her bosom told her the object of her attachment
would prove the victor. Far different emotions agitated the hearts of
the rivals, when they were informed of the Baron’s determination.
William of Montgomery flung himself upon his knees before the old
man, exclaiming with enthusiasm,
“By bath, and bed, and white chemise, [266] I will for ever be a true
knight to thee for this especial favour, my good Lord of Dolbadarn!
My lance and blade are yours at command, and,” turning to his rival,
“Hector, if I bear thee not over thy charger’s croup, why say my
heart and hand shook with fear in the encounter.—But, if thou
gainest the field, I’ll give thee a grey palfrey for thy bride, to bear
her to the church yonder, by thy side.”
“Agreed,” said Hector; “and noble Lord of Dolbadarn, if heaven
desert me not in the hour of trial, I doubt not my success in winning
thy daughter for my bride. Yet, should I fail, I promise thee, William
of Montgomery, to give thee a steed, fleeter than any in thy stables,
to bear the Lady Margaret as thy bride to church, nor will I bear thee
any ill will shouldst thou prove conqueror, but drink a health to thee
and thine, with a kind heart and true.”
At this time, there dwelt an old woman in the pass of Llanberis who
was dreaded by all the country people, for she was accounted a
witch; and on the night of that same day the storm raged furiously,
and the tall trees were cracking in the forest, when a horseman was
seen galloping up the pass. He stopped at the witch’s hut, and
knocking loudly, he cried, “Ho! mother witch! open the door! for thy
devil’s counsel is needed.”
The door was then opened, and the knight fastened his coal-black
steed, dripping with rain and sweat, to a withered ash, and strode
into the cabin. The fire reflected in his suit of steel made him
appear a knight of flame; and, as he stamped his armed heels upon
the floor, his armour rang with a muffled sound, like the death bell
which tolls for the great, who die in the odour of sanctity: and the
old hag laughed; her spirit was glad—for she knew that a deed of
damning crime was shortly to be committed!
He sat him down upon the three-legged stool, and said, “Dame, I
am ill at ease; for I love a maid whose heart I cannot win. Attend to
me;—the gallant and high-minded Montgomery I must encounter for
her in the lists; and, should he conquer, he will bear away the prize I
am burning to possess; but, if the chance be mine, her own consent
waits on her father’s choice, whose wishes are for me. Doubts on
the issue urge me to seek thy aid. May my saint desert me if I
would not rather shake hands with the foul fiend himself, than give a
palfrey for my Margaret to ride to church upon, with any but myself.”
The witch laughed aloud, till he jumped from the stool, to see her
old sides shake. “Hector of March Lyn Mawr,” quoth she, “fear not
that Margaret of Dolbadarn will ever become the bride of
Montgomery; for shouldst thou be overcome in the lists, (and my
power will not assist thee in the joust) call aloud ‘Hell kite! hell kite!’
and presently shall a gallant palfrey come and raise thee from the
ground, which being done, present it to thy foe, and thou shalt see
the issue.” He thanked her, dropped his purse upon the floor,
mounted his steed, and vanished down the pass.
There was a great assemblage of people at the castle of Dolbadarn,
to witness the jousting; and knights from all quarters arrived, to
break a lance with merry England’s best, for glory and lady love.
The tilting ground was enclosed by galleries erected for the ladies
and nobles who wished to be spectators of the games. Upon the
plain, at the end of the vale, fifty shields were hung up by the
knights who wished to signalize themselves. Three score of
coursers, with a squire of honour, first entered the lists; then
followed as many knights in jousting harness, led in silver chains, by
the same number of ladies, richly clad, to the sound of clarions, and
trumpets, and minstrelsy. When the ladies ascended the galleries,
the squires dismounted, and the knights vaulted gaily into their
saddles. The scaffoldings were hung with tapestry, and
embroideries of gold and silver; and the scene was animated and
costly in the extreme. Joy lighted up the eyes of all, save those of
Margaret and her two lovers. She sat a lily among roses, pale and
dejected. Sometimes, indeed, she lifted her dark eyes, and her
snowy neck took for a moment the carnation’s hue when she beheld
the form of Montgomery, which yet faded as quickly as it came, and
the Parian marble was left pure as before.
Sir William walked, with a bold and lofty mien, along the line of
shields, glancing at them with indifference, until he stopped before
that which bore the arms of Hector, and then a smile of scorn played
upon his lips, and he passed on. Hector marked that smile, and his
cheeks flushed with anger. Great skill was displayed by youthful
knights decked in ladies’ favours. But, when the time arrived for the
trial between Sir William of Montgomery and Hector of March Lyn
Mawr, a hum of unusual interest arose among the gallant and
beauteous auditory. From the opposed lists they passed each other,
to determine the length of the course, with visors up. Sir William
smiled gaily, but Hector wore a sad and mournful look, as though he
feared or doubted the event of the trial.
This ceremony of preparation being over, each took his post
assigned, awaiting the signal for the charge. The Lady Margaret was
pale as death, but none around her noticed it, they being all intent
upon the two knights, who wore no outward favours, though one
possessed an amulet which he had placed near his heart, beneath
his vest. It was a white rose, which the fair Margaret had taken
from her bosom, and given him an hour before in secret.
The nominal prize for the victor was a jewelled sword, but the prize
on which their hearts were set was a gem transcendant—the all-
surpassing Margaret!
And now the heralds sounded the charge, and the combatants met
in mid career. The lance of Hector was shivered upon the breast of
Montgomery; but Sir William’s struck full upon the visor of Hector,
which made him bend his plume backwards. In the second course,
Hector struck the coronal of Sir William’s helmet a skilful stroke.
Margaret fainted, and the ladies about her were busy in applying
restoratives; but none attempted to remove her, being too much
interested in the event of the joust. Montgomery cast a look of fire
up to the spot, and then re-closed his visor for the third course. His
opponent was resolved to make it a decisive one. Striking their
spurs into their chargers’ sides, like arrows shot from opposing
bows, they flew along. Then was a clash, a glittering flash! and the
prize was won—for Hector of March Lyn Mawr lay, stunned and
motionless, upon the ground, borne from his saddle by the lance of
the victorious Sir William of Montgomery!
Margaret, being restored to her senses, wept tears of joy, and spoke
most sweet words, when her lover riding beneath the platform,
demanded from her hand the honourable prize.
But a wonder now appeared, which turned all eyes to the spot
where Hector lay o’erthrown; for a milk-white palfrey, of the most
exquisite form, had galloped into the lists, and drawn him from
beneath his charger, which had fallen with him in the violent
concussion. His helmet being loosed, he soon partially recovered,
and seeing the beautiful animal frisking and curvetting, as though
overjoyed at his escape, he led it by the mane to his rival, saying,
“William of Montgomery, I give to thee this palfrey. Present it to thy
bride, to whom I now resign all claim, and only request that she will,
for my sake, let my favourite bear her to the church, where your
union is to be celebrated.”
It was a lovely thing to look upon, and the maiden promised to use
no other on that happy day.
The church of Llanberis was, at this time, about a mile from the
castle of Dolbadarn, and the road, upon the bridal morning,
resembled a mosaic pavement, when viewed from the mountain, it
was so thickly studded with the fantastic dresses of the company,
spectators, and gay flags and streamers waving in the air. The
minstrels struck up their boldest notes of war, or delighted the ears
and hearts of the female holiday makers with the soft songs of love.
All was mirth, feasting, and jollity, while the air rung with the
combined names of Margaret of Dolbadarn and William of
Montgomery.
At length, the bridal procession issued forth from the castle gateway;
the heralds led, the minstrels followed. Then came comely maidens
with baskets of flowers, which they strewed around them, as they
passed along. A body of armed knights followed and after them
their esquires. Then appeared a troop of dancing girls, adorned with
flowers, and clad in purest white; and a second band of minstrels
struck their harps before the bridegroom and the happy bride, who
rode gaily, side by side. She was dressed in rich attire; jewels
glittered upon her robes and in her hair; and she rode upon the
beautiful steed presented by March Lyn Mawr. The palfrey seemed
proud of its lovely burthen, and gentle as the unwearied lamb. The
bridegroom was clad in a light tunic and hose, and peaked boots; a
many-coloured plume fluttered in his bonnet, and many sweet words
did he whisper in Margaret’s ear. As the assembled multitude
shouted their gratulations, he bent even to his saddle bow, to thank
them for their courtesy. Young Hector rode upon her left, and he
laughed, too, and he bowed low; but in his laugh there was a
fiendish sound, and in his bow a scorn. Then followed the Lord of
Dolbadarn, his long white locks waving in the summer breeze,
surrounded by his relatives and friends. A troop of squires and
pages followed, while all the retainers of his noble house brought up
the rear.
The bride and bridegroom passed along, and thousands cheered
them on their way, with shouts and praises. The sun shone brightly
above their heads, and joy was in their hearts. On they went, until a
turning in the road brought them at once in sight of the church; but
here the palfrey grew restive, and Sir William seized the bridle,
thinking to control him. This answered but for a short distance; for
they had no sooner reached the gate, over which was carved a
cross, than, even while the groom held the stirrup for her to alight,
away, away, away flew the palfrey, like a falcon, down the wind.
The Lady Margaret was a good horsewoman, but she could not
control the enchanted steed. She, however, kept her seat well, and
hoped the unruly animal would soon relax his speed.
A hundred horsemen galloped after her, the bridegroom taking the
lead, who, being mounted on the swiftest horse, soon left the rest
behind, although unable yet to overtake the bride. The palfrey first
dashed forward in the direction of Carnaervon, but suddenly turned
off to the right, and galloped up the mountain. Hundreds of the
peasantry were trampled under foot by the horses of the pursuers;
some bruised, some crippled, and some killed, while the old Lord of
Dolbadarn wrung his withered hands, and tore his grey locks, in
frantic agony. He accused Hector as the author of all this misery,
and vented his curses upon him, which the infuriated mob hearing,
they seized upon the astonished knight, and almost in an instant
tossed him upon their spikes into the air. He fell to the ground
again, but not to rise; his plume, besmeared with blood, was
scattered in every direction; his body, pierced with twenty wounds,
spouted forth blood in fountains; blows fell upon his harness thick as
hail; while a ferocious smith, with one stroke of an axe, severed the
head from the body, and placing it upon a pike, bore the dripping
trophy of vengeance above the applauding and infuriated wretches
who had suffered in the tumult.
Those who could govern their horses flew over the broken country in
pursuit, while fleeter than a startled hind, the palfrey dashed along—
at times abating his swift flight, to give the laggards hope, who
furiously spurred their chargers forward

After the knight,

And lady bright.

But away, away flew the enchanted steed over moss and moor, o’er
hill and dale, through ford and forest; while of those who followed
up the chase some were smothered, horse and rider, in the deep
morass; some broke their necks in attempting to leap stone walls;
some dangled from the boughs in woody dell, or perished in the
river, dashed by the torrent against broken rocks; and they cursed,
and died as they cursed.
But Sir William of Montgomery pricked on his horse all foaming, and,
as the strength of the noble animal began to fail, he cried aloud
upon his patron saint to aid him. It was a charm of power, for it was
a holy one; and the creature shook the foam from his mouth, and
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