THE PIEDMONT TRIAD REGIONAL ADVANCE DIRECTIVE …PARKER REDMAN A Thesis Submitted to the Graduate...

THE PIEDMONT TRIAD REGIONAL ADVANCE DIRECTIVE PROJECT

BY

PARKER REDMAN

A Thesis Submitted to the Graduate Faculty of

WAKE FOREST UNIVERSITY GRADUATE SCHOOL OF ARTS AND SCIENCES

in Partial Fulfillment of the Requirements

for the Degree of

MASTER OF ARTS

Bioethics

December 2012

Winston-Salem, North Carolina

Approved By:

John Moskop, Ph.D, Adviser

Jay Foster, D. Min

Nancy King, JD

II

TABLE OF CONTENTS

List of Tables III

List of Abbreviations IV

Abstract V

Introduction VI

Chapter 1: Advance Directives: Concepts and Debates 1

Chapter 2: The Practicum 28

Chapter 3: Reasons, Reflections, and Conclusions 46

References 60

Appendix I: The Advance Directive 62

Appendix II: Invitation to Health Care Agent 68

Curriculum Vitae 69

III

LIST OF TABLES

Table 1: Importance of Content p. 39

Table 2: Patient Satisfaction p. 45

IV

LIST OF ABBREVIATIONS

ABA: American Bar Association

AD(s): Advance Directive(s)

HCPOA: Health care Power of Attorney

PSDA: Patient Self Determination Act

WFBMC: Wake Forest Baptist Medical Center

V

ABSTRACT

I participated in a project to rewrite the advance directives in use at Wake Forest

Baptist Medical Center. The project quickly blossomed into an initiative to improve

advance directives throughout the entire Piedmont Triad region of North Carolina. Many

other hospitals and health care providers also participated in this project. Over the course

of six months our committee met often to improve all aspects of advance directives for

this region. This thesis practicum resulted in a new, simpler set of advance directives to

be used by most area hospitals and health care facilities.

This paper includes a review of the criticisms levied against advance directives.

That is followed by a review of the project itself. Finally, a synthesis of the two explains

how our committee sought to improve advance directives in this area based upon those

common criticisms and experiences with the prior set of forms that were used. Some

final reflections and conclusions are also offered. This project was a result of hard work

by many dedicated and passionate people who were all motivated by the same goal: to

make advance directives in central North Carolina more accessible and understandable.

VI

INTRODUCTION

In December 2011 Jay Foster, D.Min, BCC, NC LPC at Wake Forest Baptist

Medical Center (WFBMC) convened a planning committee to address the current status

of the advance directives (ADs) used at the hospital. Chaplain Foster has worked as

coordinator for the Medical Center’s advance directives planning services for many

years. Another committee member, John Moskop, Ph.D, has also been working on this

topic for many years and assisted in organizing this committee. The original goal was to

make the AD forms currently used at WFBMC more easily understood by the patients.

The idea quickly grew into a plan for creation and use of a more efficient set of ADs

throughout the entire North Carolina Piedmont Triad region. WFBMC had also recently

adopted a separate but related goal of increasing the percentage of area residents who

have active ADs by providing assistance in completing these documents at the out-patient

level.

I am a joint degree student at Wake Forest. I am enrolled at both the Law School

and Graduate School, pursuing a Juris Doctor and Masters in Bioethics. To fulfill the

thesis requirement for the Bioethics program, I choose to do a practicum rather than a

traditional research-based thesis. I was offered the opportunity to participate in the

aforementioned AD program as a bioethics practicum. This AD program was a perfect

chance to combine both of my academic degree programs into an educational and

professional practicum experience, and I readily agreed to participate.

The first chapter of this thesis consists of an introduction to the topic of advance

directives. It includes a literature review, describing criticisms of both the underlying

theory and use of ADs, and supporting views. It also details some ideas proponents of

VII

ADs have advanced for their improvement, many of which have been incorporated in

some fashion in our project. The second chapter is a detailed account of the project,

including the process followed, the obstacles encountered, the final documents, and early

results. An analysis of other approaches to this same issue that different hospitals and

healthcare providers have used is also included in this chapter. Finally, the third chapter

is a critical reflection on the entire project. It combines concepts discussed in the first

chapter with experiences from the second chapter, including justifications the group

applied when making decisions about the program. It also offers conclusions drawn from

the experience and recommendations for moving forward.

1

CHAPTER 1: Advance Directives: Concepts and Debates

The goal of the Piedmont Regional Advance Directives Project (“the Project”)

from the beginning was to increase awareness and comprehension of advance directives,

as well as to encourage completion of the documents. It is helpful to explain the general

rationale and history of ADs before describing how and why we went about achieving

our objective. An advance directive, in its simplest and most general form, is just a

statement of desire or instruction in advance of the time when such is needed. In the

health care context, an AD is a document (or set of documents) that states a person’s

wishes about what medical treatment should be provided at a future time when a patient

is unable to make or communicate treatment decisions, and/or authorizes another person

to make those decisions.

The two major types of ADs are living wills and health care powers of attorney.

Different organizations and institutions present ADs in many different ways, but they

almost always use one or both of these documents in some form. A living will is a

document that states the patient’s choice of treatments (or choice regarding withholding

or withdrawal of various treatments) in the event he or she becomes incapacitated and can

no longer make or express choices. A healthcare power of attorney (HCPOA) is a

document that enables a person (called the “principal”) to appoint another person to make

health care decisions for the principal in the event he or she is unable to do so. Again,

ADs can include one or both or a hybrid of these two documents.

Prior to 1970, examples of ADs are hard to find, if they are to be found at all. The

doctor would likely determine what course of treatment should be followed in the event a

patient became incapacitated. The doctor knew the intricacies of the different treatment

2

options available to address a particular ailment. The doctor knew the patient’s history

and physiology. The perception was that the doctor was simply the smartest and best

judge. In 1975, when Karen Quinlan fell into a persistent vegetative state, public

discourse began to change this norm. Her parents wanted the hospital to remove

ventilator support and allow her to die. The hospital refused to do so. The perspective of

the hospital was understandable. They feared future liability for withdrawing treatment.

It also seemed to contradict the purpose of the hospital and of doctors, that is, to help

people and save lives, not to sit back and allow patients to die. But the perspective of

Quinlan’s parents was also understandable. They knew their daughter. They knew that

she would not want to live in that condition. The court battle over Quinlan’s treatment

sparked a national debate and gave rise to the notion of a patient’s “right to die.” “Such

cases enforced patients’ feelings of powerlessness with regard to receiving care

consistent with their preferences in case of incapacity. Hence, the anticipated role of

advance directives was first and foremost to allow people to refuse ‘death-delaying’

interventions.”1

A series of “right-to-die” cases in the subsequent decades would continue

the debate and refine and reinforce patient rights to refuse life-prolonging measures, even

after the patient had lost the ability to communicate such a desire. ADs were an

outgrowth of this national controversy. “From these cases, from an even larger body of

unreported trial court decisions, and from legislation enacted in almost every state, a

consensus has gradually emerged in law, medicine, and public opinion that termination of

1 Cees Hertogh, “The Misleading Simplicity of Advance Directives,” International Psychogeriatrics Vol.

23 No. 4 (2011): 512.

3

life support is legitimate under certain circumstances.”2 But a question remained as to

how to go about minimizing these types of disputes and this level of confusion in future

cases. Scholars and lawmakers began to contemplate and create ADs as an answer to

these questions. It was a plausible rationale: patients are more likely to get the treatment

they desire in the future if they record those wishes in the present. Additionally, if

patients were to authorize someone to act on their behalf in the event that they could not

do so themselves, then the hospital or doctor would not have to make such significant

decisions. Thus living will and healthcare power of attorney forms became more

prevalent.

On its face, the issue seems clear. Patients often know what they want and, if

recorded, their wishes can establish a clear course of action to follow. This simple claim,

however, has been hotly contested. These documents, both in theory and practice, are

passionately debated in academic, medical, and legal circles. What follows is a review of

the prevailing arguments for and against advance directives. This review will be divided

into four parts, each with a question posed as the subheading: (1) Are ADs important?

(2) Why don’t ADs work? (3) Why can’t ADs work? and (4) How can ADs work? In

the final section on how they can work, I will offer a response to some of the concerns

raised by those who believe they can’t or don’t work.

Are advance directives important?

The first question to ask is: are ADs important in the first place? One of the

primary tenets of bioethics is to respect patient autonomy. This principle asserts that we,

as people, are born with inherent freedoms and have the right to live as we choose. This

2 Alan Meisel, “The Legal Consensus About Forgoing Life-Sustaining Treatment: Its Status and Its

Prospects,” Kennedy Institute of Ethics Journal Vol. 2 No. 4 (December 1992): 310.

4

idea extends to our interactions within the realm of health care. We are free to choose if

and when we want medical treatment and, conversely, are free to choose when we no

longer want treatment. “Competent patients have a right to refuse treatment, including

life-sustaining treatment. This right is firmly rooted in the protection given to bodily

integrity by the common law.”3 Via the aforementioned Quinlan case and its progeny

this right has been extended to include respect for advance directives. “In the USA, there

is a constitutional right to have these directives honoured [sic].”4 Thus, in legal theory at

the very least, it is settled that one can state in advance directives the desire to forgo life-

prolonging treatments and have them adhered to by medical professionals.

People generally like having control over the course of their life. Patients

similarly want as much control as possible over the course of their treatment. This

remains true even in the event that they lose the ability to communicate. “Polls

repeatedly demonstrate that more than four-fifths of the population endorses advance

directives; and advance directives have been widely endorsed by medical organisations

[sic], courts, the media, and others.”5 Prior to the Quinlan case, a patient followed the

doctor’s instructions and seldom thought to create anything akin to ADs. In a short

thirty-six years our desires and practices have changed. Patients now enjoy the right

accept or refuse life-sustaining treatments.

Let us not tiptoe around the issue—death is a scary concept for many people. The

ability to control it is both desirable and reasonable. ADs are intended as a way to ensure

some level of control over end-of-life treatment when patients lose the capacity to

3 Alan Meisel, “The Legal Consensus About Forgoing Life-Sustaining Treatment: Its Status and Its

Prospects,” Kennedy Institute of Ethics Journal Vol. 2 No. 4 (December 1992): 315. 4 Ezekiel J. Emanuel and Linda L. Emanuel, “The Promise of a Good Death,” Lancet 351 (May 1998): 26.

5 Ezekiel J. Emanuel and Linda L. Emanuel, “The Promise of a Good Death,” Lancet 351 (May 1998): 26.

5

express how they might want to exercise that control: “ADs aim to preserve individual

control over medical decision making in circumstances where a person lacks decision-

making capacity.”6 In fact, two of the primary concerns of patients regarding end-of-life

care are “avoiding inappropriate prolongation of dying and retaining control over their

end-of-life decisions.”7 Whether or not this was ever a concern prior to Quinlan is

debatable. The fact that these factors are now of paramount importance to patients is not.

If having advance directives in place helps quell even a little fear patients have of dying

or losing control of their medical decision making then they serve a valuable purpose.

The prior commentary revolves around the idea that patients can somehow

establish the kind of end-of-life care they want prior to actually needing that care. But

what are their needs once they enter this stage of life? Some patients do want to receive

aggressive life-prolonging treatment. Many, however, just want to be as comfortable as

possible throughout this significant period. “The prevailing ethical practice seems to be

to recognize that the dying are more often in need of comfort than treatment.”8 Patients

are likely to experience a bit more comfort if they are confident their wishes will be

understood and followed by their doctors. This is most easily achieved by recording

those wishes in advance directives sometime before when they are actually needed. If

comfort care is what they seek more than aggressive treatment, their feelings about both

(comfort and treatment) can be clearly expressed in this form. Regardless of the style or

form of the documents themselves, “advance care planning gives patients a clear, socially

6 Marilyn Mitchell, “An Analysis of Common Arguments Against Advance Directives,” Nursing Ethics 19-

2 (2011): 246. 7 John C Moskop, “Improving Care at the End of Life: How Advance Care Planning Can Help,” Palliative

and Supportive Care 2 (2004): 192. 8 Alan Meisel, “The Legal Consensus About Forgoing Life-Sustaining Treatment: Its Status and Its

Prospects,” Kennedy Institute of Ethics Journal Vol. 2 No. 4 (December 1992): 314.

6

recognized opportunity to record their wishes in ADs and to communicate those wishes

to family and caregivers.”9

ADs are intended to enhance peace of mind for the patient. It is true that they also

help doctors and nurses more effectively do their job by clarifying the patient’s desires,

but they are primarily a tool used to ease concerns of a patient and to allow that patient to

express what course of treatment they prefer. For those patients who do not care about

their end-of-life treatment, ADs seem to provide little benefit. But for the four-fifths of

people who are concerned with these matters10

, it appears that ADs, in some form or

fashion, are the best, perhaps only way to ensure some modicum of control of end-of-life

care.

Why don’t advance directives work?

There is a vocal contingent of critics who believe that advance directives do not

work. One commentator summed up the volume of criticisms against advance directives

succinctly when he stated, “ethically there is still much debate about the moral validity of

advance directives and there are strong arguments…that question their widespread

acceptance and role in decision making.”11

One feature of this debate should be

mentioned from the outset: that is, there are two general types of ADs, living wills and

health care powers of attorney (HCPOAs). The significant majority of critiques focus on

the shortcomings of the living will. In fact, there is very little criticism at all of the use of

HCPOAs. This distinction seems a bit perplexing. Both approaches seek to determine a

9 John C Moskop, “Improving Care at the End of Life: How Advance Care Planning Can Help,” Palliative

and Supportive Care 2 (2004): 196. 10

“Polls repeatedly demonstrate that more than four-fifths of the population endorse advance directives.”

Ezekiel J. Emanuel and Linda L. Emanuel. “The Promise of a Good Death.” Lancet 351 (May 1998): p.

26. 11

Simon Walton, “Correspondence,” Anesthesia 62 (2007): 413.

7

future response to a question not yet posed. Perhaps the best explanation for why the

HCPOA is widely accepted is that the notion of designating a power of attorney is

common and traditional. People have long had the ability to appoint an agent or proxy

for a wide range of responsibilities. It made sense then to simply transfer this concept to

the medical arena when the right-to-die debate began. The concept of the living will, in

contrast, was not an approach rooted in history or precedent. It was a new idea to deal

with a new (previously unforeseen) problem. Additionally, HCPOAs often do not

contain the same cumbersome medical language that living wills do and thus are much

easier to understand. A HCPOA is also asking a question most would view as easier to

answer. Deciding who one wants to make one’s medical decisions in the event of

incapacity is much easier than deciding if one does or does not want life-prolonging

measures withdrawn at a given time. Whatever the reason, it is unquestionable that the

living will receives the bulk of the criticism in the advance directive debate.

Accordingly, much of the following focuses on the value of the living will. The issues of

this debate can be broken down into three primary categories: procedural, participatory,

and philosophical. Many of the criticisms are far more nuanced, but they generally can

be loosely grouped into one of these three broader categories.

The first general category of criticism against the use of ADs is procedural. This

category of complaints revolves around how ADs are recorded and utilized in the field.

The critics in this vein focus their arguments on the procedures that are in place to record

and implement ADs. These are also, by their very nature, the easiest to address and

overcome.

8

The pragmatic or practical procedural complaint focuses on the implementation of

the ADs. The primary concern here is whether ADs are followed at all, and, if so, how.

Two issues are often highlighted in this regard. The first is whether doctors follow them

in the event they are needed. One argument is that traumatic end-of-life care situations

are often hectic or evolving situations. Sometimes a clinician might not be able to find a

patient’s ADs in an emergency situation and instead act based upon his or her own

experience thereby neglecting the will of the patient. Rebecca Dresser, one of the

nation’s most ardent opponents of advance directives, opines that “we should probably

warn them [people who are completing advance directives] that there is some possibility

that the directive will be overlooked in the confusion that sometimes surrounds acute care

decision-making.”12

Even in non-emergency situations, many critics lament the fact that often a doctor

is going to do what a doctor is going to do regardless of what the patient desires, even if

the ADs are readily available. The doctor might justify this course of action because he

or she is the one with all the training and experience and he or she is in the best position

to determine the appropriate course of treatment. Many times the wishes of the patient

(or family) are disregarded by a “physician making the case for what he presumes to be

the patient’s best interests.”13

So, in either event, critics have expressed concern that the

advance directives cannot be located or simply will not be followed.

The second procedural issue often raised centers around the risk of clerical errors.

Medical record keeping is an inexact science. This is becoming less and less the case

12

Rebecca Dresser, “Advance Directives: Implications for Policy,” Hastings Center Report November-

December 1994: Special Supplement 3. 13

Simon Pollack, “A New Approach to Advance Directives,” Critical Care Medicine Vol. 28 No. 9 (2000):

3147.

9

with the advancement of technology and electronic medical record keeping, but even

electronic medical record systems have faults. After all, even with electronic medical

records, information is still entered by an actual person. The retention and transmission

of the record might be accurate, but if the initial entry is incorrect, then any subsequent

reliance on that entry will be incorrect. This concern persists with the entry of ADs, in

the minds of these critics. If a patient has lost decision making capacity and his or her

advance directives need to be referenced, the medical record containing the patient’s

expressed wishes needs to be accurate. A completed set of ADs does no good if the

choices expressed within were charted or recorded incorrectly. In fact, the patient’s

autonomy will not be respected if the opposite of his or her wishes is followed because of

incorrect reporting as, for example, if a patient wants to maintain life-sustaining treatment

at all times but the opposite is recorded in his chart. Needless to say, following the

incorrect notations in this case could have fatal consequences.

One study showed that “only 26 percent of the charts accurately recorded

information about those directives, and only 16 percent of the charts contained the

form.”14

This highlights two of the aforementioned concerns, both inaccurate reporting

and complete omission. In either event, the ultimate goal of following the patient’s

instructions, thereby respecting his or her autonomy, is undermined. As mentioned in the

example above, either ignorance or inaccuracy could lead to devastating consequences.

There is also a danger in simple laziness. A physician sometimes might just refuse to

look for ADs. He or she could decide it is not worth the time and trouble to locate them,

either knowing he or she would not follow them in the first place or that he or she does

14

R.S. Morrison, et. al, “The Inaccessibility of Advance Directives on Transfer from Ambulatory to Acute

Care Settings,” JAMA 274 (1995): 478-82.

10

not agree with what the patient had expressed in them. Whatever the reason, ADs can be

lost, hard to find, not looked for, not followed: all of which are often brought up by those

opposed to the use of ADs, most often specifically living wills.

The second major category of critique can be described as a participatory (or

completion) complaint. The argument is that, even though studies have shown people are

in favor of the right to have ADs, the fact remains most people do not fill them out.

Critics of the use of ADs argue that if they were so important and effective, then most

people would have completed them.

The reasons for not preparing or completing ADs are varied. The reason most

often given, by both patients themselves and critics, is the inability to understand what

information is sought by the documents and how to most accurately provide that

information. “Empirical findings, however, indicate that many study subjects do not

understand what an advance directive is and that fewer still have undertaken to complete

a formal directive.”15

Again this seems like a legitimate complaint. If people can’t

understand what the AD says or is asking of them, then it is highly unlikely that they will

fill it out.

The notion of the knowledge gap can be taken even a step further. Most patients

already feel at a disadvantage because of the complexity of medicine and technology in

general. A hospital nurse or administrator gives a patient a set of forms and usually the

only question is “where do I sign?”, because the substance of the forms is beyond the

scope or comprehension of the average patient. This is certainly true regarding advance

directives. They often include technical medical terms such as “dementia,” “life-

15


December 1994: Special Supplement p. 3.

11

sustaining treatment,” and “terminally ill” or “persistent vegetative state”. While terms

like these have entered the general lexicon, actually defining them is sometimes elusive.

In fact, legislatures and other drafters of ADs struggle with defining such terms. Adding

yet another layer of complexity is the fact that these forms often try to describe future

indefinite and undefined conditions. “Often advance directives fail to take into account

the complex clinical situations that can occur in the future.”16

By their very nature ADs

can be difficult to understand and complete.

The level of detail and description often discourages completion. Patients who

find ADs a valuable tool to record their wishes can still end up having their wishes

misinterpreted or ignored because they did not accurately complete the ADs. “Many

people who take out advance directives do so under the belief that they know the answer

to the question [that is being asked of them on the forms], when in fact they do not.”17

The primary goal of ADs is to that ensure a patient’s autonomy is respected. Incorrect or

incomplete responses to questions on ADs can greatly undermine that goal.

Yet another concern about the accuracy of filling out advance directives is the gap

between what patients think they want versus what options are actually available to them.

“Many patients and their families may be ignorant about their options for end-of-life

care.”18

Patients might think they know what they want in hypothetical care situations,

but that confidence can be misplaced when they do not know all of the different

opportunities or approaches to address such a situation. Considering both the level of

16

Simon Walton, “Correspondence,” Anesthesia 62 (2007): 412. 17

Christopher James Ryan., “Betting Your Life: an Argument Against Certain Advance Directives,"

Journal of Medical Ethics 22 (1996): 95. 18

John C Moskop, “Improving Care at the End of Life: How Advance Care Planning Can Help,” Palliative

and Supportive Care 2 (2004): 193.

12

complexity of the documents and the incomplete knowledge of patients, it seems

understandable why many people have not filled out advance directives.

There is also another explanation why many people have not completed advance

directives. It has little to do with comprehension or medical knowledge. It is much

simpler and more basic than that. Many people neglect to fill them out because of social

and psychological views of death. Though society is inundated with thoughts and images

of death (pop culture is overflowing with them, from video games and music, to movies

and news), dealing with death in real life is distinctly different. Many people feel

uncomfortable with addressing thoughts and concerns about death. More than half of all

Americans do not have a will to address financial issues upon death.19

It would stand to

reason that even more have not addressed end-of-life care situations since they involve

even more “depressing” issues than financial concerns.

Another element of this is the emphasis society places on health and vitality.

Explorers and poets have chased the myth of the fountain of youth for thousands of years.

Our culture is unabashed in its quest for slowing or reversing the aging process. There is

a “persistent social attitude that denies death…youth is celebrated as the ideal; longevity

is desired, and remains a primary standard for evaluating health-care systems.”20

Actual

illness or disease extends this intentional avoidance even further. The closer a patient

gets to needing advance directives often the more reticent they are to address the

19

“Almost three-quarters (71%) of adults under the age of 34 do not have a will, says a new survey by the

online legal service Rocket Lawyer. And even 41% of aging Baby Boomers do not have one.” Christine

Dugas, “Times Change Wills, yet Many Americans don’t have one,” USA Today: Money, April 30, 2012,

accessed September 1, 2012, http://www.usatoday.com/money/perfi/basics/story/2012-04-27/preparing-a-

will/54632436/1. 20

Ezekiel J. Emanuel and Linda L. Emanuel, “The Promise of a Good Death,” Lancet 351 (May 1998): 21.

13

possibility of dying. “Many patients do not want to discuss end-of-life care when they

are seriously ill.”21

Further complicating the issue is the fact that many people simply feel invincible.

It is a fact of life that we all will die at some point, yet many still refuse to accept this

eventuality. Walt Disney even went so far as to have his head frozen and preserved, with

the hope that eventually medical technology would create an answer for death and he

could be unfrozen and brought back to life. Even if most people do not think they will

live forever, most think they will live longer than they actually do. “Patients who

overestimate their life expectancy or think treatments are more effective than proven

might put off advance-care planning and preparing themselves and their family for the

end of their life.”22

All of these thoughts can help explain why many people refuse to

address end-of-life care situations and feel uncomfortable with filling out advance

directives.

A related and supplemental issue some critics raise regarding participation is the

ineffectiveness of the Patient Self-Determination Act (PSDA). A reaction to prominent

right-to-die cases, the PSDA is federal legislation aimed at giving patients more

information about their rights to prepare advance directives and to make treatment

decisions. The public backlash from cases like the Quinlan and Cruzan cases (the PSDA

was passed in 1990, shortly after the Cruzan case was decided) led federal lawmakers to

address patient concerns and to enact legislation that would provide patients more control

over the course of their medical treatment. The requirements of the PSDA include

mandating institutional healthcare providers to inform patients of the existence of, and

21

Simon Pollack, “A New Approach to Advance Directives,” Critical Care Medicine Vol. 28 No. 9 (2000):

3146. 22

Ezekiel J. Emanuel and Linda L. Emanuel, “The Promise of a Good Death,” Lancet 351 (May 1998): 24.

14

opportunity to prepare, ADs. It was intended to increase patient awareness about what

rights they have when choosing or receiving medical treatment.

Critics of ADs argue that the PSDA has failed due to the generally low percentage

of patients who have completed ADs. “Empirical studies demonstrate that: the PSDA has

generally failed to foster a significant increase in advance directives use; it is being

implemented by medical institutions and their personnel in a passive manner; and the

involvement of physicians in its implementation is lacking.”23

The rationale is that the

PSDA was intended to encourage patients to fill out ADs and that, because the majority

of patients have not done so, the PSDA is a failure.

Two of the primary issues critics raise against the use of ADs can be categorized

as procedural and participation matters. Without question, however, the majority of

criticism surrounding their use is based on philosophical perspectives. These

philosophical arguments can be divided into two subgroups. One angle presents the

“knowledge” question: how can we know now what we might want in the future based on

unknown circumstances? The other angle is that a present competent person and the

future, incompetent version of that person are, in fact, two different people. This

“personal identity” question, for its proponents, disqualifies any past version of a person

from binding the future, incapacitated version of the same person based on the notion that

they are two separate, distinct persons with different desires and interests.

The “knowledge” approach asserts that a person simply does not know what he or

she will want in the future based on conditions or issues that are unknown in the present.

At any single point in time a person can state what he or she wants, at that time, but can

23

Angela Fagerlin and Carl E. Schneider, “Enough: The Failure of the Living Will,” Hastings Center

Report Vol. 34 No. 2 (2004): 32.

15

only assume what he or she will want in the future. With changes in time and

circumstance, however, those assumptions can also change. “Our anticipatory beliefs

often fail to recognize our ability to adapt and that it is notoriously difficult to imagine

how one’s current preferences will hold in a given situation that one has never

experienced before.”24

At any given moment in time there are three “versions” of a person: the person

one used to be, the one he or she is now, and the one he or she will be in the future. This

is often described as the past, present, and future self. At any given moment a person can

assert what his or her present self wants. He or she can also recall what a past version of

the self would have wanted. But, the argument goes, there is simply no way to assure any

person knows with any degree of certainty what his or her future self will want. Our

current self cannot know what our future self thinks about a medical issue because it is

impossible to know what conditions will surround that issue or treatment of it. It is also

impossible to know what in our life might have changed how we feel about it. This

argument is echoed by nearly every critic of advance directives. Even some proponents

of ADs will accept that there are different selves at different stages of life; “the current

and former selves are very different.”25

The primary function of ADs is to capture a person’s wishes at one fixed moment

in time so as to be referenced at a future time of incapacity. The problem is that, over

time, our wants and desires change. This is entirely rational. As we grow, age, and

mature our interests can and do change dramatically. A 25-year-old bachelor living in an

24

Cees Hertogh, “The Misleading Simplicity of Advance Directives,” International Psychogeriatrics Vol.

23 No. 4 (2011): 513. 25

Marilyn Mitchell, “An Analysis of Common Arguments Against Advance Directives,” Nursing Ethics

19-2 (2011): 247.

16

apartment will likely have different choices and concerns about future medical care than

those of a 60-year-old father of four with six grandchildren. Likewise, as careers and

families change so to can sensibilities about what gives life its meaning and what might

justify maintaining or withdrawing medical treatment. Fagerlin has referenced in several

different articles a popular study which concluded that “over periods as short as two

years, almost one-third of preferences for life-sustaining medical treatment changed.”26

The rationale is thus extended that the original advance directives a person fills out can

often contain instructions contrary to those he or she would actually give at the time the

directives are actually needed, if he or she was still able to do so at that time.

This is a plausible concern. Each year brings new considerations into one’s life

and sees other considerations diminish or evaporate. I might want to forgo life-sustaining

treatment as a young man. Once I have children or a significant career I might feel as if

there is more to fight for, more to hold onto. The opposite can also be true. As a young

man I might feel like I have the whole world in front of me and want to maintain

treatment as long as possible to soak it all in. Once I progress in age I might decide that I

have made good use of my time here and am ready to move on. In either scenario the

desires for the future can change drastically.

The “personal identity” approach takes this logic a step farther. It is not enough

to say simply a person will not know what he or she wants in the future. Instead, once a

person has lost capacity, he or she is then a different person than the past self altogether.

Rebecca Dresser, the chief proponent of this rationale, puts it this way: “an advance

directive carries no weight in a decision on whether to withhold treatment, since the

26


Report Vol. 34 No. 2 (2004): 34.

17

individual in the debilitating state is not the same person as the person who created the

advance directive.”27

Put another way, “the personal identity problem suggests that

seriously disrupted psychological continuity could produce a situation where one

person’s advance directives is used to determine the care of a different person.”28

Regardless of which perspective a critic argues from, most all agree that a future

self should not be bound by the decisions of the former self. Because of the lapse in time

between the preparation of ADs and their use, it is also argued that such decisions could

never be truly informed. Informed decision making (informed consent) is perhaps the

most important expression of respect for patient autonomy. “The problem is that true

autonomy requires the person to have adequate understanding or, in legal terms, to be

fully informed. But with advance directives how informed can one be about a situation

that is yet to occur?”29

Critics argue that a future self should never be bound by the decisions of a former

self. The decision made by the former self was not fully informed because it was

necessarily made prior to when it was needed by the future self, thus time and events had

changed the situation. Some critics feel so strongly about this that they argue people

simply cannot answer the questions posed on advance directive forms. “Almost everyone

assumes that he knows his own mind and that he would know the choices he would make

in the event of a crisis…nevertheless evidence strongly suggests that many people simply

get it wrong.” And if a person cannot get the answer right, critics argue that a disclaimer

27

Rebecca Dresser, “Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in

the Law,” Arizona Law Review No. 28 (1986): 373. 28

Elisabeth Furberg, “Advance Directives and Personal Identity: What is the Problem?” Journal of

Medicine and Philosophy 37 (2012): 61. 29

Simon Walton, “Correspondence,” Anaesthesia 62 (2007): 412.

18

should be present and prevalent in advance directives, suggesting all forms should

“inform the potential user of the likely inaccuracy of their current decision.”30

Finally, the issue of incompetency is raised. ADs usually only take effect once a

patient has lost decision making capacity. A patient who is competent and coherent still

has the opportunity to develop his or her thoughts and express them. The concept of ADs

was proposed in response to a situation (like the Karen Quinlan case) where a patient had

lost the ability to do so. The competency argument adds yet another element to this

debate. The question is often raised as to whether or not an incompetent person can ever

have his or her own unique interests as it relates to his or her medical treatment. This

inquiry ponders the nature of incompetency. That is, if a person is unconscious or

otherwise incompetent, does he or she still have individual interests? Critics argue that

once patients are determined to be incompetent, their personhood (that is those

experiences and ideas that make up that individual) has shifted to such an extent that

nothing their former self determined could still be valid. Critics will often express that a

future incompetent self is so different and distinct from the former competent self that

they are, in effect, two separate people (the personal identity approach). Some take this

argument a step further by saying the incompetent version of oneself simply cannot

formulate individualized unique interests (that is those interests that are separate and

distinct from interests all patients have, like a patient bill of rights).

Ben Rich is a supporter of ADs, but even he is willing to concede that a change

takes place once a person loses capacity to make decisions. “There is little to no

30

Christopher James Ryan., “Betting Your Life: an Argument Against Certain Advance Directives,"

Journal of Medical Ethics 22 (1996): 97-8.

19

psychological continuity between a competent and an incompetent self.”31

The argument

follows that since people cannot know what they will want when the surrounding

circumstances have left them incompetent, their decisions made when competent are

either incorrect or inconsequential. The goal of respecting a patient’s autonomy and right

to make whatever treatment decisions he or she wants is unachievable when the process

by which that decision is declared is inherently flawed.

Why can’t directives work?

Most of the critics who express doubt that ADs work in their present form do not

stop there…most agree that they cannot work. They could take the stance that ADs are

flawed and need to be improved. Instead they simply argue that ADs cannot work in

principle or practice. Fagerlin and Schneider sum it up in the introduction of their article

“Enough: The Failure of the Living Will” when they comment, “nor can any degree of

tinkering ever make the living will an effective instrument of social policy.”32

Their

strong philosophical opposition to ADs, coupled with their experiences, precludes certain

commentators from accepting any form of ADs.

Most of the rationale surrounding the conclusion that advance directives can

never work involves one or more of the factors mentioned in the previous section. If a

former self can never know what a latter, incompetent self would truly want, then an

advance directive can never be completely correct. The forms are so technical and the

concepts so complicated that no amount of education could ensure that everyone will

understand what ADs are asking of them. The clerical errors surrounding the recording

31

Ben Rich, “Personhood, Patienthood, and Clinical Practice: Reassessing Advance Directives,”

Psychology, Public Policy, and Law Issue 4, No. 3 (1998): 612. 32


Report Vol. 34 No. 2 (2004): 30.

20

and implementation of ADs will always be present. And the simple fact that people’s

wishes can change with the wind make these a fundamentally flawed set of documents, in

the eyes of their critics. “At the broadest level, the empirical data challenge the existing

consensus that directives are the ideal mechanism for resolving decisions on life-

sustaining treatment for incompetent patients.”33

Fagerlin and Schneider pose the question of how advance directives could work

as proponents of them believe they do or should. They list five criteria ADs would have

to meet:

“First, people must have living wills. Second, they must decide what treatment

they would want if incompetent. Third, they must accurately and lucidly state

that preference. Fourth, their living wills must be available to people making

decisions for a patient. Fifth, those people must grasp and heed the living will’s

instruction.”

Instead of determining how each of these could be met or what reforms are needed to

help ensure that advance directives can meet these criteria, they simply conclude “These

conditions are unmet and largely un-meetable.”34

The opinion that advance directives do not work is understandable and at least

partly defensible. There are few things in health care that are perfect, that need no

adjustments or modifications. The critics of ADs are intelligent, well-educated

individuals who generally have a passion about end-of-life care. But to conclude, based

on their observations and opinions, that ADs can never work seems premature and

unimaginative. The first question I would pose to these critics is “Do you believe people

should have a say-so in their medical treatment in end-of-life situations?” I doubt anyone

33


December 1994: Special Supplement p. 2. 34


Report Vol. 34 No. 2 (2004): 32.

21

would disagree that patient autonomy is that important. But, instead of trying to figure

out how to improve the current state of ADs, these critics choose to argue it is incurably

flawed. The second question is “What is the alternative?” The vast majority of critical

literature reviewed draws the conclusion that ADs do not work, cannot work, and should

be done away with, but fails to offer plausible alternative solutions to what is a very

important issue. My inference, drawn from the absence of alternatives, is that critics feel

patients lose the right to autonomy once they are declared incompetent. Both my

literature review and experience in this project have led me to conclude that there is much

to do with the advance directive, but that they are important enough to improve rather

than abandon.

How can advance directives work?

Advance directives are not perfect. This is a consensus view among both critics

and proponents of their use. Nevertheless, I believe that there are answers to the

criticisms of ADs that can lead to effective change. The first step to improving ADs is to

determine where they are flawed. The critics have given us a good starting point to

recognize what needs to be changed. Instead of simply saying they do not work therefore

they cannot work, it would be more productive to change what doesn’t work, given the

importance of respecting a patient’s wishes in his or her most vulnerable state.

Critics have pointed out that wishes might change. People go through many

evolutions in life, and their preferences can change numerous times. This does not mean

that advance directives are ineffective. Instead, it indicates there is room for

improvement. Creating an advance directive should not be a static or isolated

occurrence. AD developers and facilitators should make it clear on the document that as

22

preferences change the document can be changed. In fact, it is good policy to

periodically review one’s advance directives. A person’s choices about end-of-life care

might change. A person might also want to change who he or she appointed as health

care agent based on relationship changes. Medical conditions and technology can change

just as often as a person’s sensibilities in life so it can never be a bad idea to revisit such

important forms. A certain disease might be awful to live through right now in a

patient’s eyes, but in 10 years the treatment options could change drastically, thereby

changing how the patient might then feel about living with the same disease. “Requiring

periodic acknowledgment of one’s AD may decrease the likelihood of an outdated

preference.”35

The generic criticism, often repeated, that ADs might be lost or not followed at all

by the doctor does not seem to be a complaint directly aimed at ADs. Rather, it appears

to be critical of different elements of the health care system. It is not the fault of the

advance directive if its information is incorrectly charted. Nor is it the fault of patients or

their forms if the doctor neglects them in the event of incompetency. It seems analogous

to saying a business owner should not keep accurate accounting books because his

accountant will likely enter the wrong data or substitute his own thoughts about earnings.

The fault lies with the accountant, not the business owner. Likewise, if a patient does not

want a feeding tube and accurately expresses such, it is the doctor’s fault if he or she

chooses to ignore that directive and insert a feeding tube, or it is the institution’s fault if it

loses the ADs or misrepresents them in charts.

35


19-2 (2011): 249.

23

Likewise, the criticism that ADs do not work because many people have not filled

them out seems misguided or misplaced. That is like saying giving blood is not a good

idea because most people do not do it. In fact, most people do not give blood and there

are various reasons why. But it seems obvious and undeniable that blood donation is a

valuable practice. People choose not to fill out ADs for many reasons, including those

chronicled in this chapter. Expressing final wishes regarding end-of-life care is important

for those who choose to complete ADs.

The Patient Self-Determination Act was intended to be an empowering piece of

legislation, one designed to let patients know what their rights are and to encourage them

to exercise those rights. The PSDA was not meant to force patients into filling out a form

they might not want to. It is intended to instruct hospitals and other health care

institutions to inform patients of their rights and options. It is up to the patients to decide

what to do with that information. The fact that it did not lead to more people filling out

ADs does not seem to be a glaring problem with ADs.

Knowledge is a significant barrier for those opposed to the use and acceptance of

ADs. Again, however, it does not follow that due to a lack of comprehension the

documents should just be abandoned. The documents should be framed differently and

rewritten if current forms are hard to understand, given the importance of what is sought

by ADs, namely to honor a patient’s rights when they have lost the ability to assert those

rights themselves. In addition, the documents should not be distributed for isolated

completion. Instead, they should be approached as more of a collaboration between a

person, professionals, and potentially those closest to that person. ”Expressing one’s plan

for end-of-life care in an advance directive is only one step, albeit an important step, in a

24

larger and ongoing process that includes education, reflection, communication, and

review.” The ultimate goal is to improve end-of-life care for the patient and “each step in

this process can contribute to improved care at the end of life.”36

Consultation with facilitators can promote increased awareness and understanding

about ADs. There are other ways to achieve improved understanding as well. More

clearly written directives might be a start. Supplemental materials further defining

confusing terms and rights is another potential avenue to increase familiarity and comfort

with the documents. There can be an equilibrium between the simplicity of the document

and the level of understanding of the end user. Finding where that might lie seems more

productive than eliminating the use of advance directives altogether. Increasing

education is possible and beneficial, even the staunchest critics agree. Rebecca Dresser

has produced numerous articles bemoaning the use of ADs, yet even she can agree that

“some studies have found that the rate of advance directive completion increased among

subjects who were exposed to educational interventions.”37

The arguments about former and future selves present another area of contention,

but also opportunity. The point has been raised that the former competent self cannot

truly know what the future incompetent self will want. That begs the question, however,

of who will know what the future self wants and who should be able to make that

determination. If we accept that argument then who is in the best position to determine

what the future self wants at the time such information is needed? Mitchell offers two

interesting responses to this inquiry. The first is that we allow substituted judgment in

36

John C Moskop, “Improving Care at the End of Life: How Advance Care Planning Can Help,” Palliative

and Supportive Care 2 (2004): 194. 37


December 1994: Special Supplement p. 4.

25

the event that an incompetent patient presents for treatment, either through his or her

health care agent or often just whatever family is in the room. The family members

might think they know what the patient would want, but it is still speculative. If we allow

the doctor to make the decision he or she is doing so based on beliefs about what the

patient might want or what the doctor thinks is best. In either case, someone else is

determining what the patient would want. Neither can assert undeniable, concrete

confirmations of the patient’s wishes.

At least there is a “vested interest on the part of the former self” for the treatment

the future self will receive.38

Anyone else making the decision for an incompetent patient

thinks he or she knows what the patient would want in the given situation, but the level of

certainty falls far short of knowing. At the very least, the former self can make a decision

about the future self that is as reliable as what a family member thinks. If it is all

speculative anyway, why not at least let the same person speculate about his or her future

treatment rather than letting a third party do so? Put another way, who has the right to be

wrong? In the event a third party makes the decision, a wrong decision can be

catastrophic, but also unfair. At least the once competent version of the person in

question got to make the decision. At the very least it removes the burden of culpability

from any third party if, in fact, the decision is an inaccurate or incomplete one.

The second response is to assert that the former and future self are still, in fact, the

same person. They share the same physical body. They share a common experience.

They share the same heritage, even if the future incompetent self does not recall it. An

Alzheimer’s patient born in Germany was still born in Germany even if he or she does

38


19-2 (2011): 248.

26

not remember it. That bond, that connection, though diminishing, is still stronger than

any third party can assert with the patient. “Although, admittedly, the competent and

incompetent person may be vastly different, they remain housed in the same physical

self…we recognize the incompetent’s claim to the former competent’s real and personal

property.”39

Even if one accepts the personal identity argument, that does not end the inquiry

into the utility or fairness of ADs. One commentator offered this analogy: “we might

consider the author of the advance directive as something akin to a legal guardian of the

victim [patient]. Even though the author is distinct from the victim, the author, as

guardian, can make the decision to withhold treatment.”40

The focus is about the best

interests of the patient. While there might be a distinction between the former and latter

self, the former self will presumably still have the best interests of the latter self in mind

when he or she prepares directives, at least to the extent any third party can possibly

have.

Finally, ADs can be effective, in spite of the declarations of the vocal critics. A

study of Arkansas physicians found that 88% of doctors find advance directives

effective.41

They are not always followed. They might not always be found. They are

by no means perfect documents. But ADs serve a vital role in the treatment of patients at

critical moments in their lives. They can help ensure patients maintain their voice after

they lose the ability to communicate. At a minimum, they give patients a level of

comfort and peace of mind. If patient autonomy is to be respected throughout a patient’s

39


19-2 (2011): 247. 40

Christopher Buford, “Advancing an Advance Directive Debate,” Bioethics Vol. 22 No. 8 (2008): 429. 41

Kent W. Davidson, “Physicians’ Attitudes on Advance Directives,” The Journal of the American

Medical Association Vol. 262 No. 17 (1989): 2416.

27

life, and not just when he or she is competent, then ADs are important. They are not

without flaw. But they should not be abandoned.

28

CHAPTER 2: The Practicum

I first met Chaplain Jay Foster in December, 2011 to discuss his initial plans for a

new advance directive project. He had been in multiple meetings with colleagues

interested in improving the advance directives in use at Wake Forest Baptist Medical

Center (WFBMC) prior to our introduction. The purpose of these meetings was to

determine if the currently used forms were adequate or could be improved. When the

North Carolina legislature redrafted the statutes codifying living wills and HCPOAs in

2007, the revised statute included an example of each form (a model living will and a

model health care power of attorney form) that would be permissible under the new

standards. WFBMC opted to use the model forms verbatim rather than drafting its own

set of forms. Facilitators (including residents in the chaplain program at Wake Forest

who are often assigned to facilitate ADs during patient consultations) and health care

professionals, however, had all expressed varying degrees of frustration or dissatisfaction

with the standard forms. WFBMC decided to form a new group to look at ADs and try to

improve the forms the medical center would use. Jay Foster, in our first meeting,

explained that his primary goal was to have a new set of forms in place by the beginning

of the upcoming fiscal year, in July 2012. I thought this was a reasonable goal, though he

explained that committees at the administrative level often take time to enact changes of

this magnitude. We also discussed other goals he wanted to address, namely, to enlist

other health care providers in the region to participate in this project. He also expressed a

desire to initiate a new effort to inform patients in WFBMC outpatient clinics and

encourage them to prepare ADs. He said he welcomed my participation in this project,

and we began immediately.

29

The first step was to create a small working group within WFBMC to establish

the parameters of the project. The primary objective of the project was to draft a set of

ADs that were more user-friendly, that is, easier to understand and complete. On

February 7, 2012, Chaplain Foster and I met with John Moskop, Ph.D, who is the chair of

the Clinical Ethics Committee at WFBMC, and Beth Gianopulos, WFBMC Associate

Legal Counsel. John and Jay expressed their desire to improve ADs at Wake and Beth,

on behalf of the legal department, expressed support for this project. That was an

important first step; no change in advance directive forms could occur without the

support and ultimate approval of the legal department at WFBMC. After that meeting we

identified other potential participants in this project and sent out the invitations for what

would be our first full committee meeting.

On March 8, the whole committee met for the first time. There would be a few

additions and subtractions along the way, but the majority of work on this project was

done by the participants of this meeting. Chaplain Foster, Dr. Moskop, Ms. Gianopulos

and I were joined by two others as representatives from WFBMC. Gerardo Maradiaga is

the bioethics project coordinator at WFBMC. The hospital had recently approved the

creation of a new position, advance care planning coordinator, and Keith Stirewalt, who

was hired in that capacity, became an invaluable member of the group. One of the first

questions that was posed at the February meeting was who else should be invited. The

first name that came up was Dee Leahman, director of the Hospice-sponsored

Community Partnership for End of Life Care and a long-time advance care planning

advocate. He was excited about the project and immediately committed his time and

expertise to the group.

30

Novant Health is the other major healthcare provider in the Triad and their

participation and support of this project was essential if we wanted the final work product

to be utilized regionally. Tom Bauer, M.B.A., R.T., was an important addition to the

group, as was Reba Teeter, director for patient relations at Novant and some of her

representatives. Deborah Love, who represented UNC-Chapel Hill Center for Bioethics,

joined the group as well. Finally, the group felt it was important to have legal

representatives (apart from those from Novant or WFBMC) from the community who

worked in this field involved in this project. Theodora Vaporis, an attorney in

Greensboro who sits on the NC State Bar Estate Planning Committee, and Aimee Smith,

a Winston-Salem attorney who sits on the State Bar Elder Law subcommittee, accepted

the invitation and became important members of the project.

The March meeting was an important first step to creating more user friendly

ADs. I had the responsibility at this meeting to review other advance directive programs

from different parts of the state and nation. Other groups or committees around the state

and across the country have taken many different approaches to simplifying ADs. I did

research on a few of these and analyzed the specifics of several different sets of forms. I

evaluated Respecting Choices, an advance directive initiative created in La Crosse,

Wisconsin. Jay Foster’s brother is a director of pastoral care in Michigan for Saint

Joseph Mercy Health System and responsible for their advance care planning. They had

recently changed their advance directive program and I reviewed those forms. I reviewed

Five Wishes, a program that originated in Florida and is now used in the western part of

North Carolina. I also reviewed a program known as the Low Literacy AD, which

originated in California but has since been utilized in other jurisdictions. Finally, I

31

reviewed ADs created by the American Bar Association (ABA) that were intended to be

compliant with the legal requirements in 40 of the 50 states in the U.S. This gave me

both a regional and national perspective on the many different approaches healthcare

providers have taken to offering and administering ADs.

I created an illustrated presentation that analyzed quantifiable data for

each set of documents, including: document length, options, document form, method of

choice, instructions, layout, and language. I also tried to specify positive and negative

elements of each approach. The objective of this presentation was to educate committee

members on what alternative advance directive forms were currently available, and to

encourage creative reflection on our options. It is easy enough to say the forms currently

being used are not the most effective, but it is another thing to create better options.

There are other smart and passionate people around the country dealing with these same

issues, and my hope was to illuminate elements we might adopt for our project.

A consensus was reached at the first whole committee meeting in March that the

advance directive forms currently in use at regional hospitals could be improved. To no

one’s surprise, all members of the group expressed similar dissatisfaction with the forms

their institutions were using. The most important inquiry then was to determine how to

go about changing them. We adopted the theory of “strength in numbers,” deciding that

the best way to achieve our ultimate objective, which was to help people understand and

fill out ADs, would be to get healthcare providers throughout the region on board with

this project. If everyone in the Piedmont Triad region used the same improved AD

forms, it would benefit all parties involved, from patients and family members to

physicians and other health care representatives. To achieve this goal we had to extend

32

invitations and hope that others in the region were motivated to address this issue and

held similar views about the need for change.

At first it was a consensus among those at our March meeting. Within months,

however, representatives from hospitals and institutions in High Point (High Point

Regional Health), Greensboro (Moses Cone), Morehead, Lexington, and Alamance and

Randolph counties all heard about the work our committee was undertaking and wanted

to be a part of it. The response to our project was overwhelming and indicative of just

how important it was to improve the ADs in use throughout the region.

Following the first full meeting in March, a set of forms I analyzed was

distributed to each member of the committee with a request to look each set of forms over

and answer some survey questions about the documents. The survey questions asked

about pros and cons of each set of forms and also asked each member to rank certain

aspects of each, as well as rank them overall. Jay Foster had hoped that there would be a

strong majority favoring one of these sets of forms over the others. His rationale was it

would be much easier to improve a document if we had one to start with as opposed to

creating a new one from scratch. He had expressed a preference for using the ABA form

as the foundation for our project. He felt it could survive legal scrutiny and would carry

weight because it had the approval of the ABA. The survey results indicated that the

group was not as convinced. While five respondents rated the ABA form “good”, three

rated it “so-so” and another person thought it was “poor”. Each of the forms reviewed

received similar mixed results. In light of this, we concluded that we should use the

strengths of existing forms to draft a new AD form for our region.

33

Another interesting observation gleaned from the survey results was a need to

balance potentially conflicting interests. We asked participants to rate how important

certain factors were to ADs, such as avoiding technical language, ease of reading, and

clear selection choice. There was near consensus that each of these factors was very

important (for instance 100% of respondents felt ease of reading was either “very

important” or “essential”). Yet the documents that seemed to be most easily readable,

namely Respecting Choices and NC Low Literacy, were rated the lowest of all the

documents. The survey also asked respondents to list how important certain areas of

content were to include (e.g. language about CPR, language about artificial nutrition and

hydration, space to include religious or spiritual beliefs, etc.). The result was that most

people voted to have everything included. But this would lead to the creation of another

lengthy document that seemed contrary to the goal established by the whole group from

the outset to create a simplified set of ADs. These results suggested a tension between

simplicity and comprehensibility, on the one hand, and inclusion of essential content, on

the other. (See Table 1 on p. 39 for more information about survey results.)

One of our primary objectives was to make ADs more easily understood by the

average person. We hoped to encourage more people to complete ADs by simplifying

them. Our first and most significant task was to determine how this could be achieved.

One of the factors I highlighted in my presentation was the length of the various

documents I compared. There was a consensus among the committee members that a

shorter document was better than a long one. But that did not settle the issue. We could

elect to have a one-page, even one-sentence, document, but if it did not meet state

requirements then it would not be legally valid, nor would it adequately express the

34

person’s wishes. We had to come up with ways to shorten the documents but still make

them eligible to receive the statutory protections granted to those who would implement

them and ensure the person completing it had adequate opportunity to express his or her

wishes.

The issue of what is required in ADs to make them legally valid (i.e. to ensure

liability protection for those who implement them and to give legal recognition to an

incompetent patient’s wishes) was an issue with the legislature in 2007 when they set out

to revise North Carolina ADs, as well as a point of discussion during our committee

meetings. The statute that defines living wills lists four criteria for such a document to be

legally valid: (1) it states a declarant’s desire to not use life-prolonging measures if any of

three conditions are met (incurable or irreversible terminal condition, permanent

unconsciousness, and irreversible advanced dementia), (2) the declarant is aware the

document authorizes a physician to withdraw treatment, (3) witnessed by two witnesses,

and (4) signed in the presence of a notary. These are the only requirements specified in

the statute. Other issues, such as the use of artificial hydration and nutrition and organ

donation, are not mentioned in the statute. But those, among other issues, are repeatedly

brought up in discussions about ADs, especially at the state legislature level. The

question of what is legally required in ADs is a weighty and debated one. The applicable

statute, however, explicitly requires only the above elements.

The requirements for selecting a health care agent are even more broad. Any

competent person 18 years or older can appoint “any competent person who is not

engaged in providing health care to the principal for remuneration, and who is 18 years of

35

age or older, may act as a health care agent.”42

Thus the model forms contain much more

language regarding protections and limitations (which often follow the statutes verbatim)

than they do about the who and why of ADs.

The model forms contained in the statutes are also far more complex and verbose

than the statutes require. The legislature included in the statute a model form as an

example of a valid AD. The introductory statement about the model form says that it is

specifically determined to meet the requirements of the statute. It does not say it is the

only form that can or does meet those requirements. WFBMC had chosen to use the

model forms, unchanged, presumably because it was guaranteed to be compliant with

state law. Our group determined, however, that other, simpler documents would also

comply with the statute so long as they contained certain language and provisions.

The model documents were the product of a legislative compromise in which

different special interest groups that wanted something included in the forms voiced their

opinions. In order to get its own language included in the final draft, these groups would

often agree to a different element sought by another group. For example, organ donation

designation is not required by the statute, but an organ donation interest group urged that

it be included. Another example was the vocal opinions of certain religious groups who

wanted a desire to receive feeding and hydration tubes to be a separate and distinct

element within the living will. Again, this distinction is not required by statute but it was

included in the model AD forms.43

The end result was a set of documents almost ten

pages long that many people found confusing and whose length discouraged completion.

42

See NC General Statutes, Chapter 90, Article 23 and Chapter 32A, Article 3. 43

See different versions of the bill that were debated by the North Carolina General Assembly.

<http://www.ncleg.net/gascripts/BillLookUp/BillLookUp.pl?Session=2007&BillID=s+1046&submitButto

n=Go>

36

Our group engaged in similar discussions at each stage of the document creation

process. The difference between our process and the state legislative process was that

members of our group were more willing to sacrifice some of their own opinions in favor

of the desire to ultimately produce a shorter, simpler document. The rationale became

“what good is it if I get my issue included in the documents but ultimately no more

people decided to fill them out than in the past.” That is not to say that length was the

only focus of the group, far from it. It was more of an underlying principle that informed

our decisions.

A few weeks after the full committee meeting in March a smaller work-group met

to begin creating the document and discussing other issues. At this “workshop” meeting,

we divided into three subgroups: one drafted the AD document itself, a second discussed

the supplemental materials, and a third group considered directions and prompts for those

who facilitate AD conversations. The actual document is not the only part of completing

ADs. Seldom are they completed in a vacuum. At WFBMC (like most other hospitals) a

chaplain resident (or other designated staff member) responds to requests for assistance

with ADs. This person visits the patient and his or her family, if they are present, to

explain the purpose and content of AD documents. As part of its advance care planning

facilitation program, Winston-Salem’s Hospice and Palliative Care Center distributes an

advance care planning informational workbook developed and published by the Carolinas

Center for Hospice and End-of-Life Care, the professional association for hospice

providers in North and South Carolina.

We decided as a group that we could not effectively address advance directive

issues just by drafting a shorter document, but should also address facilitator and patient

37

education. One group of two pastoral care representatives met to discuss how a

facilitator should organize an advance care planning conversation with patients. Another

group, including myself, Jay Foster, and Tom Bauer, met to determine what instructions

and supplemental materials should be developed. The largest of the three groups met to

draft the actual documents.

The whole group made a preliminary decision to create one unified document. As

mentioned above, the NC statutes include two separate forms, one for a living will and

another for HCPOA.44

Some of the other approaches we analyzed around the country

chose to present two separate documents, while some opted to combine the two. We

choose the latter option, believing that combining the two types of ADs into a single

format would make the document as a whole simpler and easier to understand. At our

March meeting we asked each member what recurring issues they experienced with the

current set of ADs. People choosing just one or losing the other was often mentioned.

Combining both documents gives people the clear choice to fill out what they want and

reduces the likelihood someone might lose one but not the other.

Many other elements of the document we created were a direct result of

addressing what were common issues that arose during patient conversations and

experiences. One example of this was the choice of instruction to the physician of “may”

or “shall”: (1) “my health care providers may withhold or withdraw life-prolonging

measures” and (2) “my health care providers shall withhold or withdraw life-prolonging

measures”. This was a matter of much debate at the state level and its inclusion in the

model forms was championed as an improvement to the old forms in use prior to the

revision in 2007. As one lawyer wrote, now the form “allows you to require your living

44

See NC General Statutes, Chapter 90, Article 23 and Chapter 32A, Article 3.

38

will be honored regarding withholding medical treatment, rather than leaving the option

with the attending physician.”45

“May” or “shall” is a legal distinction between a

directive that must be followed and one that is discretionary. This language confused

many people and, in our opinion, was not a necessary or valuable addition considering

that the purpose of the document was to instruct the doctor on what the person wanted

him or her to do. Some of the group members reported that this option often required

lengthy explanations in discussions with the person which could distract a person’s focus

from more important elements of the ADs. One of the attorneys expressed a view that

this choice was still important to include, but acquiesced to the opinions of the vast

majority. This was just one example of the many compromises made by our committee

in an effort to simplify and improve the ADs that would be used throughout our region.

Another example was the option added in 2007 to the statutory model living will

to designate whether the person’s living will or instructions from the person’s health care

agent should be followed in the event the two instructions conflicted. The model

documents did have this question listed in a series of questions but the method of

selection was ambiguous for many people. Our solution was to have this as a stand-alone

question and indicate the choices with bold type. The problem of conflicting desires

between the living will and the person who is designated as a person’s health care agent

occurs quite often, according to many in our group. The ability to choose to have one

decision override the other is an important one. A unified document meant that all of this

information was included and the person could clearly state which of the two decisions

should override the other.

45

John Slayton, “Update Your Healthcare Directives,” The Compass, Fall 2007: 2.

39

Table 1 above displays how members of the group felt about the inclusion of certain content. It shows how many people agreed or disagreed with

the importance of: (1) a combined document vs. two documents, (2)the need to include a blank space for people to write specific wishes or instructions

to their health care agent, (3) including the override provision just discussed, and (4) whether or not to include the choice of may or shall in the instructions

Format and selection issues were another focus of our group. The model

documents had multiple words and sometimes whole paragraphs italicized or bold typed.

They also employed multiple selection methods in the same document. For one category

the person was supposed to initial a box or line. The next section directed the person to

cross out words or sentences they did not agree with. Another section asked them to

write in specific instructions. Finally, another section instructed the person to choose

between options. The result was many people got confused about how to answer

questions on the document and often recorded something contrary to what they actual

sought to convey. We had to decide not only what font and language to use, but also how

to clarify selection choices.

Some people choose to fill out a living will or a HCPOA, not both. To address

the concerns of those individuals, our new AD form allows a person to check a box if he

0

2

4

6

8

10

12

StronglyA

Agree Neutral Disagree StronglyD

Table 1: Importance of content

combined doc

blank spaces

override

may/shall

40

or she only wants to fill out one type of AD and does not intend to fill out the other form

in the document. If someone wants to complete a living will but not designate a health

care agent, he or she has that option with the new form. Likewise, if he or she feels

strongly about appointing someone to be in control of his or her medical treatment but

does not want to address the issues that a living will contemplates, then that can be

recorded. The key is to make people feel comfortable with the documents. The more

freedom of choice they have, and the more comfortable they are with the ADs, the more

likely they are to complete them.

As noted earlier, we chose simplified language in the new AD form where it was

available. We also aimed for a high school reading level as a maximum, but preferred

lower than that. The final form was assessed at a 7th

grade reading level. A person is far

more likely to complete a set of ADs that he or she can understand and we achieved a

reading level that most people can readily comprehend.

The notary requirement was another issue we discussed as a group. North

Carolina is one of only four states in the country that requires that ADs be notarized to

provide statutory immunity from liability for health care professionals. Some of our

members expressed displeasure with this requirement. Nonetheless, it is a state

requirement. Issues often arose, however, when a person would complete the document

and sign it, obtain the required two witness signatures, and then take it to a notary for

notarization. Notarization can only occur, however, when a document is signed in the

presence of the notary. This meant that the person would have to complete another set of

forms, find two witnesses again, take them to the notary, and all three would have to sign

it in the notary’s presence. If getting many people to fill out ADs once is already a

41

problem, expecting some to fill them out twice is unrealistic. To remind people of the

notary requirement, we included an instruction at the top of the page in bold type to put

off signing the document until in the presence of a notary.

One debate we had as a group was whether or not to include additional space for

personal, specific instructions or limitations on the authority of one’s health care agent.

The model form listed many specific instructions and limitations that a person could

include or ignore. Each of these specific instructions was not required by the statute.

They took up a few pages. Some of the instructions did not apply to everyone. Other

instructions were of no interest to some people. It was suggested that, in lieu of this

laundry list of specific instructions, we simply include a blank space on the page for the

person to include those instructions or limitations that are important to him or her. One

argument against the use of a blank space was it would take up more space. Ultimately, a

few blank lines were included because it was decided that allowing a person to

personalize the document would give him or her piece of mind and might encourage

more honest and thoughtful responses. The space for special instruction also allowed us

to omit many of the “special provision” categories on the model form that added

significantly to the overall length of the document. Allowing a person to customize his or

her ADs with specific instructions while also reducing the length of them was a “win-

win” solution.

Another debate was whether or not to include a specific option to authorize one’s

health care agent to donate one’s organs and tissue. The first version of our AD forms

did not have this. But later versions included an option for organ donation, though this

addition did not require the addition of any additional pages to the document. The

42

prevailing argument was that it is an important issue to enough people to warrant

inclusion. The counter argument was that most residents have already officially declared

their wishes regarding organ donation on their driver’s license. While I personally agreed

with the latter position, I did not see much harm in adding this option. But this

illuminates the overarching issue we dealt with throughout the drafting process. If we

included everything everyone wanted, because only a brief mention would not hurt

anything, then we would have a lot of brief mentions and probably a document as long, or

longer, than the model forms we were trying to improve. It became apparent early on

why the model forms looked the way they did--compromise is not easy. To the group’s

credit, however, we never lost sight of the ultimate goal and truly worked in a

collaborative and democratic manner.

Several drafts of the new AD forms were submitted to the whole group for

comments. We would read those comments and discuss them at a subsequent meeting of

the whole committee. We would then revise the documents, making often minor but

important changes deemed appropriate by the group. This process was repeated a few

times until we had a form that was approved by the entire group. Even after the final

draft was printed, some members still had a small issue with one item or another, but we

all realized the process had to end at some point and all involved expressed satisfaction

with the final form.

We simultaneously addressed other matters like patient education and

supplemental materials. One unique component we agreed upon was a document

supplemental to the HCPOA. Several committee members reported that people would

designate a health care agent by means of a HCPOA, but would forget to tell that person.

43

When the designated agent was consulted in that capacity, he or she expressed ignorance

about this appointment as the person’s health care agent and did not know what treatment

plan the person would want to pursue. We decided to prepare an invitation that the

person would give to his or her health care agent and ask that person to sign if he or she

accepted the person’s invitation. This document has two positive consequences. The

first is, it provides a clear opportunity for the person and his or her agent to have a

conversation about the designation and what choices the person might make. The other is

that it asks the designated agent to take ownership of this important responsibility. While

neither a legal requirement nor legally enforceable, it nonetheless gives the health care

agent information about this task and encourages some accountability and responsibility.

We also will create a pocket-sized information card for each person who

completes a HCPOA. Doctors or nurses often do not know if a patient has a HCPOA or,

in the event he or she has, who the health care agent is. Keeping a small credit-card-sized

form simply naming the agent in one’s wallet might prevent this problem from occurring

in the future. I presented each of these concepts during my original presentation about

other advance directive programs around the country, and they were received favorably.

The group accepted the final documents in June, 2012. (See final advance

directive in appendix.) A process that many feared could take years to complete only

took six months. Everyone was surprised and pleased with the pace and passion of the

committee. This did not end our endeavor though. We still had many more things to do.

The first thing we addressed was when and how to introduce the new forms. We sought

an objective comparison of the two documents (the original model forms and our new

form). The committee was immersed in this project for half a year, so of course we

44

believed that the new AD form was a marked improvement on the old forms. But what

would a third party conclude? Better yet, what would a person who is filling out an AD

think about this document? We decided to conduct an informal study to confirm or rebut

what we thought we knew.

With the help of Tom Bauer among others, I created a set of questions to

accompany the use of each set of forms. We would continue to offer only the old set of

forms for a few weeks in June, then offer only the new set of forms for the same period of

time. With each form people were asked to fill out a quick questionnaire about the form.

We also asked facilitators to fill out a form at the end of each trial period based on their

observations from helping people with the forms. At the end of the trial period, it was

apparent that people preferred the simplicity of our new forms to the originals (see table 2

below). Nearly 10% (3 of 34) reported they did not understand the old forms compared

to only less than 2% (2 of 102) who reported that they did not understand the new forms.

Additionally, only 10% (10 of 100) of people surveyed thought the new forms were too

long, while almost a quarter of people (8 of 34) surveyed who thought the old forms were

too long. Facilitators also expressed greater satisfaction with the new forms. They were

often able to have much more productive and substantive conversations with the person

because they were not caught up in defining and explaining the nuances or the legal

language of the older forms. The results of our informal study confirmed what we had

hoped and what we worked for—that the new forms were an improvement over the

model forms.

45

Table 2: Patient Satisfaction

The next step is to organize a regional public launch. The document is already in

use at some regional hospitals including those in the Novant system as well as WFBMC.

But we want to do a public launch where both community residents and health care

professionals are introduced to our new ADs. Different ideas about how to introduce this

to the community have been discussed. Some favor a continuing education workshop or

conference for healthcare professionals to introduce our new ideas to them. Others favor

a public launch to inform the community at large that they have new options to express

their treatment wishes. Still others favor an academic conference to examine the

documents and related issues. The details are still being worked out for this. We want

local medical professionals to be informed about ADs that might be easier to locate and

follow. We want facilitators to know there is an easier set of forms to educate people

about and help them complete. To that end, we have also discussed training models and

other educational tools to teach facilitators about these documents and how to use them.

And we want the public to embrace ADs in a new way and feel encouraged to seek out

and complete ADs. There are many ways to achieve these aims; we just have to

determine the best course of action to do that.

Old Forms Strongly A Agree Neutral Disagree Strongly D N

Understood whole document 14 13 4 3 0 34

Document took too long 3 5 8 7 11 34

New Forms

Understood whole document 59 41 0 1 1 102

Document took too long 2 8 16 47 27 100

46

CHAPTER 3: Reasons, Reflections, and Conclusions

The first chapter of this paper described and evaluated a variety of different views

on the benefits, and shortcomings, of advance directives. The second chapter was a

review of my experience working with the committee that seeks to improve ADs in use

throughout the Piedmont Triad region of North Carolina. This final chapter will be a

synthesis of the two. I will discuss how and why our committee specifically addressed

some of the common criticisms of ADs. Then I will describe my personal reflections on

the project and some final conclusions.

As the first chapter of this paper details, critics of the use of ADs offer a variety of

arguments why advance directives should not be used or cannot work at all. I divided

those criticisms into three general categories: procedural, participatory, and

philosophical. I mentioned at the end of that chapter my personal responses to many of

the criticisms raised against the use of ADs. I will now continue by explaining how our

committee addressed these common concerns about the effectiveness, accuracy, and

necessity of advance directives.

Addressing Procedural Issues

The first general category of criticisms was based on complaints about the

procedures used to implement ADs. One of the arguments about ADs’ ineffectiveness

focused on how often they were lost, unavailable, or simply not followed when

referenced. Many of the committee members described experiences where they

witnessed patients in the ER or ICU whom they knew had completed ADs, but the ADs

could not be found when they were needed. ADs are in place to respect patient autonomy

regarding their choice of treatment during times they are otherwise unable to

47

communicate those wishes. Patients’ autonomy is greatly undermined when their wishes

cannot be followed because ADs they had previously completed cannot be located. It

seems an unlikely solution to this problem to expect people to carry full copies of ADs

with them at all times. It is often difficult to determine exactly when ADs might be

needed given their very nature and the fact that we seldom know when we might lose

decision-making capacity. It is true that sometimes patients have been in the hospital for

long periods of time or have long-standing existing relationships with their healthcare

providers, so that provider might know if ADs have been completed and might know

what they say. But many times a person experiencing a medical emergency will be

treated by the nearest hospital or doctor and the person will have had no time to confirm

the completion or content of his or her ADs.

Our group discussed a few options to address this common problem. The one

idea that gained the most favor was to include a business-card sized form that listed the

person’s health care agent on it along with contact information for that person. This card

could be included in a folder containing the ADs as a cut-out or perforated tear-away. A

person is instructed that, once he or she appoints someone as a health care agent in the

actual AD, then he or she can also note that person’s name on the cut-out. He or she can

then remove it from the folder and put in inside a wallet or purse. While it might be

unrealistic to expect someone to always carry around a set of standard sized forms, most

everyone usually carries a wallet or purse with them. This can increase the likelihood

that, in the event of an emergency, people’s wishes expressed in their ADs can be

honored.

48

Likewise, another procedural complaint is that appointed health care agents often

did not know that they were the designated agent for a person or, if they do know that,

they sometimes do not know what the person’s wishes were for medical treatment. Our

committee addressed this issue on two levels. The first was a set of materials on how to

have the conversation with the health care agent. This is intended to help a person

discuss his or her health care wishes with whomever is appointed as the agent. It is

meant to be an informal way to prompt or construct what can often be viewed as a

delicate or difficult conversation to have. As mentioned in the first chapter, death is a

scary subject to many people, and they want to ignore or disregard it as long as possible.

The efforts of our committee were centered on how to make the topic itself more

approachable and how to make the conversation easier to have. This could be in the form

of actual guidelines for people to take with them that accompany blank ADs, or in

recommendations for the facilitator who is discussing these issues with the person prior

to completion.

The other way we approached the issue of informed health care agents was to

include a form letter intended for the health care agent in the packet with the ADs. As

discussed in chapter two, this letter has no official legal standing or enforceability. It is

instead intended to promote dialogue between the person filling out the AD and the

person appointed as the primary health care agent. There is no way for any third party to

ensure completely that the appointed agent knows about the designation, but a letter of

this kind helps to promote that notification. It can also lead to a discussion about the

person’s treatment desires and minimize the chance that the agent does not know what

the person wants. Our committee felt these two measures, which were a product of the

49

Respecting Choices program in Wisconsin, were positive steps in improving the

relationship between the person filling out ADs and the agent appointed in those ADs.

The complaint that a doctor is likely to ignore ADs anyway is hard for advance

directive facilitators to combat. We, as a committee, believe in the importance of ADs

and that is why we worked to improve the forms. What the doctor might do with the

form in the future is out of our control. Dresser, in a statement quoted in the first chapter,

suggested a note be added to all ADs that says they might not be followed. Think about

that in practice, however. A patient is given a set of forms to express what medical

treatments they want or do not want. While reading over the documents, he or she comes

across a line that says what exactly: “your doctor probably will not follow these

instructions” or perhaps “whoever reads these ADs will ignore you”. That seems to me

to be an unnecessary overreaction to a problem that is the fault neither of the forms

themselves nor the person filling them out.

Our best chance to influence the actual implementation of desires stated in ADs is

to make them as clear and unambiguous as possible. For the doctor who thinks he or she

knows best and is always going to do only what he or she wants and not what the patient

wants, we can do nothing about that. Sometimes, however, a doctor plans to follow the

advance directive written by the patient but cannot tell what the patient wants after

referencing the ADs. This is either because the question is badly worded or the patient

did not answer the question with enough accuracy or specificity for the doctor to

determine the meaning. This is an issue we actively sought to address and improve. We

chose our questions and words very carefully. Many people on the committee had years

of experience working with the model forms and knew which questions or areas were

50

most often confusing for the person filling them out or for the doctor trying to honor

them.

One example is a question about whether or not the person wants to receive

nutritional support via a feeding tube, in given situations. The model form had an

exceptions section for artificial hydration and nutrition that had 4 bold-typed notes and

three separate choices that required initialing. Even within those three questions the

words ‘DO’ and ‘ONLY’ were bold faced each time. The result, as many had

experienced and expressed, was this section proved cumbersome and confusing for

people filling out the living will. People would select more than one question to initial

and essentially contradict their own responses. Doctors who tried to reference this form

would have no idea exactly what the person was trying to express. Our committee

decided to simplify this section by asking the person to initial only one question: “Even

though I do not want my life prolonged by other life-prolonging measures in situations

initialed above, I DO want to receive tube feeding in those situations.” The statement is

even followed by the brief instruction: “initial here only if you DO want tube feeding in

those situations.” This made the person’s choice as clear as possible to future users of

this form.

Another example from the model forms that often led to confusion was the

naming of a health care agent in the health care power of attorney form. The model has a

space for listing three individuals, labeled as A, B, and C. Though the form did state in

the instruction to list those chosen in the order named, a conflict could arise where two

persons were both listed in the document and would argue as to which one was intended

to be the health care agent. We looked at different options to remedy this problem, and

51

ultimately decided to have the first question in the HCPOA ask whom the person wanted

as his or her health care agent. Below the space to list the agent’s information (name,

address, email, etc.) is a prompt stating “If this person is unable or unwilling to serve as

my health care agent, my next choice is…” ahead of a space to include the information

for that second choice. This makes a clear distinction for both the person filling out the

form and for those named in it regarding who is intended to be the primary health care

agent. The second choice for an agent is only authorized to be such when the first choice

is unable or unwilling.

Finally, the overall readability of the document was an underlying focus as we

evaluated word choice and format. Electronic word documents can be assessed for their

level of literacy by the Fleisch-Kincaid Readability Index. You can create a word

document and select the index and it will analyze the document to determine at what

grade level the language used is readable. The model forms had essentially a college

reading level. This meant that the model forms were very difficult to understand and

complete for any area resident who did not attend college, even more so for those who

did not finish high school. Our committee focused on the fact that the more people who

could read and understand the ADs, the more people would fill them out, and the more

likely it was that their choices were an accurate reflection of what they really wanted.

When we completed the final version of our ADs, they were assessed at a 6th

-7th

grade

reading level. This fact alone ensured that many more people living in this region could

understand and complete ADs if they were so inclined.

There is no way to ensure complete and total adherence to the choices reflected in

a person’s advance directives when treatment decisions are needed. That responsibility

52

falls to the health care professionals and family members present when a person becomes

incapacitated and his or her ADs are available. The best way a committee like ours can

improve the use of ADs is to make the information contained in them as accurate and

easily understood as possible. We felt we accomplished a significant improvement over

the previous model forms in this regard.

Addressing Participation Issues

The aforementioned discussion leads into the second category of criticisms levied

against ADs, and that is that too few people complete them. The primary way to combat

this issue is to simply make the forms more accessible or approachable. We set out to

rewrite the ADs for the Piedmont Triad and came up with a shorter, simpler set of

documents. This alone should encourage more people to complete ADs, but that is only

part of the equation. We have discussed various ways to introduce this new form to the

community. While the form and function of such an event is still being formulated, it

will be a chance to introduce the topic to many area residents and to show them how

much more comfortable with ADs they can be. One response to the problem of a lack of

AD completion is to inform the public about what they are and why they are important.

Another response is to show them a set of forms they can easily read, understand, and fill

out. Some kind of public launch event can help to achieve both.

End-of-life care occurs during a very important time in a person’s life. Advance

directives seek to ensure that each person has a chance to express his or her wishes about

what medical care or treatment is desired at this critical time. If someone, for whatever

reason, does not want to complete ADs, then he or she has the absolute right not to have

to do so. But there are many people who do not know about ADs or what they seek to

53

accomplish. And there are still others who might know what ADs are but who, after

taking some time to read and consider them, especially as they are written in forms like

the model forms, decide they are too complex to fill out. This project, and any

subsequent public launch event, is an opportunity to give those two groups of people

another, perhaps better, opportunity to consider and complete advance directives. The

improvements we have made to our regional ADs could also promote a more positive

attitude towards them from the health care community. If local health care professionals

become more familiar with the new ADs and encourage their further use, it helps at every

level of the health care process.

Another common criticism is that, because desires might change over time,

completing ADs for a time that might be far in the future does not guarantee that a

person’s wishes will accurately be recorded. One critic, discussed in chapter one, opines

that there should be a disclaimer on ADs that the person answering the questions might

get it wrong. Like the prior Dresser proposal, I wonder what this disclaimer would look

like: bold-faced type at the top or bottom of all ADs telling the person filling them out

that he or she is likely getting the answers wrong? Perhaps, instead, it might be just a

statement admonishing the person because he or she does not actually know what he or

she will want in the future, regardless of any certainty felt at the present. That seems to

be an audacious, even arrogant, proposition.

Our committee realized that often a person’s wishes about future medical

treatment can change. One way to address this issue is through our facilitator education

materials. Facilitators should advise each person completing ADs to periodically reread

his or her ADs to ensure the wishes expressed in the forms have not changed. They can

54

also advise people that there is nothing wrong with changing their mind about choices

they made on ADs. In the event that they have, it should be made clear to each person

that revoking ADs is not a difficult process. Simply redrafting a new set and discarding

the old one is all that is needed to make a new set of ADs legally valid. Critics of the use

of ADs like to point out that often people get confused about how to revoke ADs and

create new, overriding ones. But this need not be an impediment for completing ADs

because they are, in fact, far easier to revoke than many people realize. They are not

permanent or irreversible forms should the person change his or her wishes in the future.

Discouraging the completion of ADs based on that fact seems akin to a scare tactic.

Addressing Philosophical Issues

The final category of criticisms is philosophical. We, as a committee, can do little

to change one’s mind if he or she truly believes that the incompetent person is a separate

and distinct person from the former self that completed the advance directives sometime

prior to that incapacitation. Taking the argument against ADs to that extreme leaves no

room for improvement of the document, because any form that seeks to bind a future

incompetent self, if that future self is in fact a different person, is no different than a form

that seeks to bind a complete stranger. Our committee did not spend much time trying to

counter that logic. This line of criticism challenges the moral legitimacy of advance

directives. These objections cannot be overcome by any procedural or structural

improvements to the documents. For the critic who says ADs are flawed, we said

figuratively, as a group, ‘let’s see if we can improve those flaws.’ For the critic who says

ADs can never work because the idea is fatally flawed, a committee of people who

believe ADs are important can do little. The committee made the constructive decision

55

early on to try to change the things about the model forms in use throughout the region

that needed to be changed and to promote education about ADs throughout the region.

The aforementioned discussion of the philosophical criticisms against ADs leads

me to my penultimate conclusion: what is the better alternative? I was a part of a

committee of people who live in this region and work in the health care setting every day.

They see ADs regularly and know what problems using the model forms commonly

presented. They also see enough to believe that ADs are an important tool for people in

this region to maintain some control over their medical treatment once they lose decision-

making capacity. The goal is to respect a patient’s autonomy, even after he or she has

lost the ability to communicate his or her wishes. Once that has happened, I failed to

read one sensible argument as to why another method is better.

If the person’s ADs are to be ignored or ADs were never completed, who then

makes the decisions at such a critical time in the person’s life? In practice it is the family

member or members who are most often present during this period. But why is any third

party, family member or not, in a better position to make crucial medical decisions about

a person’s treatment than the former competent, capable version of that person? Even if,

for the sake of argument, we accept that the two temporal stages of the same person are,

in fact, different people, they are still more closely related to one another than any family

member or friend could ever be. They share the same physical body. They share many

of the same experiences. They have experienced many of the same pains and they will

experience the same physical death.

None of the previous discussion considers motivation. It can be presumed that,

even if I am a different person after incapacitation, I will still have that person’s best

56

interest in mind when making the decisions that ADs contemplate because he is still

closely related to me. Any third party might be similarly motivated. But, unlike when I

make the decision regarding my future, any third party might also be motivated by other

things. They could fear death or suffering. They could be in line for an inheritance.

They just might not want to be bothered or burdened. Whatever the case, there is at least

some possibility that a third party making the decision about the person’s medical care is

motivated by something other than what is in that person’s best interests. And what of

the person who has no third party to make the decision? If he or she really loathes the

idea of being kept alive in a persistent vegetative state, how else can the wish to avoid

that be known or discovered? A doctor or nursing home employee might do what he or

she thinks is best and keep the patient alive long after that patient would have wanted to

be kept alive. A living will is the only way for the person who has no close family or

friends to maintain some level of control and autonomy.

My final conclusion is that advance directives are valuable documents. They are

far from perfect, but they serve an important and useful purpose. Unlike every other

member of this committee, I did not come to this project with a preconceived notion

about the use or need for ADs. Everyone else on the committee had the perspective that

ADs were a good thing but that the ones in use in our region needed to be changed. I had

no such perspective because I had no such experience. I knew what ADs were generally

but that was the extent of my knowledge. It took me just a few seconds of reading the

model forms to determine I did not think they were efficient or accessible forms. But I

kept an open mind throughout this process and came to the ultimate conclusion that ADs

are worthwhile.

57

I determined that most people should have some kind of ADs in place because

you never know when tragedy might strike. Not having flashlights or bottled water could

prove harmful if a hurricane strikes. Likewise, not having something in place to guide

your medical treatment during end-of-life care could be just as harmful. Through

anecdotal evidence and this experience, I believe everyone should have something in

place that expresses what kind of medical treatment you want if you should ever lose the

ability to communicate those desires yourself. Without it, you leave some of the most

important decisions in your life to whomever might be around at the time or simply to the

medical team who may or may not know you at all.

There is an old saying that “I’d rather have it and not need it than need it and not

have it.” I think that is an appropriate way to approach advance directives. Unlike the

vocal critics against ADs, I fail to see the harm in having them. Even if your desires have

changed over time and you neglected to change your ADs, at least a decision you held at

one time is still being honored. Though that might be contrary to the decision one might

make later on in his or her life, it is better than decisions being made about your end-of-

life care that are not based on any desires you had ever expressed. The dying process,

including end-of-life care, is already such a delicate, intimate, and defining time in any

person’s life. Going out on one’s own terms, whenever possible, has to be considered a

good thing.

From a personal standpoint, this practicum was rewarding on a number of levels.

Bioethics is an interdisciplinary field of inquiry and is lends itself to a practicum-based

thesis. The field analyzes many real world issues that have real world consequences.

Whether it is clinical bioethics, research bioethics, or policy making, most of the

58

components of bioethics are happening every day in every city in America. This

practicum was a great opportunity to see bioethical theory and practice in a tangible

setting, one which ultimately led to important results.

I was unaware of exactly what to expect when I began this practicum. I had the

notion in my head that I might observe some meetings, maybe include a random thought

here or there. From the very beginning, however, my active participation was

encouraged. I quickly went from a committee observer to a committee member. That

suited me well; I am not the wallflower type. I feel the experience became much more

rewarding because I took some ownership of the process.

We had medical personnel, pastors, business people, administrators, lawyers, and

academics in the same room. It turned out that I was well positioned in this environment.

My dual training (law school and bioethics) gave me a unique insight and perspective on

the committee. I was often able to bridge the gap between the legal and bioethical minds

in the room. I could understand the theories and practical proposals being suggested

while at the same time understand the legal ramifications of those suggestions.

This project began as just something to do to fulfill my thesis requirement. By the

end of the project that had changed dramatically. It became one of the most fulfilling,

rewarding experiences of my academic life. I am truly proud of my participation in this

project and ultimately feel like we accomplished something that will provide a real and

important benefit to area residents and health care professionals.

I played an important role on this committee. I was at every meeting and

expressed my ideas, approval, and concerns when warranted. I helped inform the

committee about other approaches to advance directives around the country. I helped

59

shape the language and structure of the document. I played a role in shaping the

corresponding instructions and supplemental materials. I assisted in creating the patient

and facilitator surveys to determine if our efforts to improve regional ADs was

noticeable. I contributed significantly to every step of this process and was personally

thanked by virtually every committee member for having done so. Lastly, I came to

know and respect some wonderful people whose views and hard work I would have not

otherwise known about. Everyone on this committee was passionate about helping

people and it showed in the congeniality, professionalism, and efficiency with which our

committee did our work.

60

REFERENCES

Buford, Christopher. “Advancing an Advance Directive Debate.” Bioethics Vol. 22 No.

8 (2008): 423-430.

Davidson, Kent W. “Physicians’ Attitudes on Advance Directives.” The Journal of the

American Medical Association Vol. 262 No. 17 (1989): 2415-2419.

Dresser, Rebecca. “Advance Directives: Implications for Policy.” Hastings Center

Report November-December 1994: Special Supplement S2-S5.

Dresser, Rebecca. “Life, Death, and Incompetent Patients: Conceptual Infirmities and

Hidden Values in the Law.” Arizona Law Review No. 28 (1986): 373-405.

Dugas, Christine. “Times Change Wills, yet Many Americans don’t have one” USA

Today: Money, April 30, 2012. Accessed September 1,2012,http://www.

usatoday.com/money/perfi/basics/story/2012-04-27/preparing-a-will/54632436/1.

Emanuel, Ezekiel J. and Linda L. Emanuel. “The Promise of a Good Death.” Lancet 351

(May 1998): 21-29.

Fagerlin, Angela and Carl E. Schneider. “Enough: The Failure of the Living Will.”

Hastings Center Report Vol. 34 No. 2 (2004): 30-42.

Furberg, Elisabeth. “Advance Directives and Personal Identity: What is the Problem?”

Journal of Medicine and Philosophy 37 (2012): 60-73.

Hertogh, Cees. “The Misleading Simplicity of Advance Directives.” International

Psychogeriatrics Vol. 23 No. 4 (2011): 511-515.

High, Dallas M. “Families’ Roles in Advance Directives.” Hastings Center Report

November-December 1994: Special Supplement S16-S18.

Hope, Tony. “Advance Directives.” Journal of Medical Ethics 22 (1996): 67-8.

Jacobs, Harris. “The Texas Advance Directives Act-Is it a Good Model?” Seminars in

Perinatology 33 (2009): 384-390.

Lark, Jude and Cheryl Gatti. “Compliance with Advance Directives: Nursing’s View.”

Critical Care Nursing Quarterly Vol. 22 No. 3 (November 1999): 65-71.

Maclean, Alasdair R. “Advance Directives, Future Selves and Decision-Making.”

Medical Law Review 14 (Autumn 2006): 291-320.

McAliley, Lauren, Et. Al. “The Use of Advance Directives with Adolescents.” Pediatric

Nursing Vol. 26 No. 5 (September-October 2000): 471-482.

61

Meisel, Alan. “The Legal Consensus About Forgoing Life-Sustaining Treatment: Its

Status and Its Prospects.” Kennedy Institute of Ethics Journal Vol. 2 No. 4

(December 1992): 309-345.

Mitchell, Marilyn. “An Analysis of Common Arguments Against Advance Directives.”

Nursing Ethics 19-2 (2011): 245-251.

Morrison, R.S., et. al. “The Inaccessibility of Advance Directives on Transfer from

Ambulatory to Acute Care Settings.” JAMA 274 (1995): p. 478-82.

Moskop, John C. “Improving Care at the End of Life: How Advance Care Planning Can

Help.” Palliative and Supportive Care 2 (2004): 191-197.

Pollack, Simon. “A New Approach to Advance Directives.” Critical Care Medicine

Vol. 28 No. 9 (2000): 3146-3148.

Rich, Ben. “Personhood, Patienthood, and Clinical Practice: Reassessing Advance

Directives,” Psychology, Public Policy, and Law Issue 4, No. 3 (1998): 610-628.

Ryan, Christopher James. “Betting Your Life: an Argument Against Certain Advance

Directives." Journal of Medical Ethics 22 (1996): 95-99.

Slayton, John. “Update Your Healthcare Directives.” The Compass, Fall 2007: 1-3.

Walton, Simon. “Correspondence.” Anaesthesia 62 (2007): 412-423.

62

APPENDIX I: The Advance Directive

An Advance Directive For the State of North Carolina

A Practical Form for All Adults

Introduction

This form allows you to express your wishes for future health care and to guide

decisions about that care. It does not address financial decisions. Although there is

no legal requirement for you to have an advance directive, completing this form may

help you to receive the health care you desire.

If you are 18 years old or older and are able to make and communicate health care

decisions, you may use this form.

This form has three parts. You may complete Part A only, or Part B only, or both

Parts A and B. To make this advance directive legally effective, you must complete

Part C of this form.

This form complies with North Carolina law (in NCGS § 32A-15 through 32A-27 and

§ 90-320 through 90-322).

Part A: Health Care Power of Attorney

1. What is a health care power of attorney? A health care power of attorney is a

legal document in which you name another person, called a “health care agent,”

to make health care decisions for you when you are not able to make those

decisions for yourself.

2. Who can be a health care agent? Any competent person who is at least 18

years old and who is not your paid health care provider may be your health care

agent.

3. How should you choose your health care agent? You should choose your

health care agent very carefully, because that person will have broad authority

to make decisions about your health care. A good health care agent is someone

who knows you well, is available to represent you when needed, and is willing to

honor your wishes. It is very important to talk with your health care agent about

your goals and wishes for your future health care, so that he or she will know

what care you want.

4. What decisions can your health care agent make? Unless you limit the power

of your health care agent in Section 2 of Part A of this form, your health care

agent can make all health care decisions for you, including:

▪ starting or stopping life-prolonging measures

▪ decisions about mental health treatment

▪ choosing your doctors and facilities

63

▪ reviewing and sharing your medical information

▪ autopsies and disposition of your body after death

5. Can your health care agent donate your organs and tissues after your

death? Yes, if you choose to give your health care agent this power on the form.

To do this, you must initial the statement in Section 3 of Part A.

6. When will this health care power of attorney be effective? This document

will become effective if your doctor determines that you have lost the ability to

make your own health care decisions.

How can you revoke this health care power of attorney? If you are competent, you may revoke this health care power of attorney in any way that makes clear your desire to revoke it. For example, you may destroy this document, write “void” across this document, tell your doctor that you are revoking the document, or complete a new health care power of attorney. 7. Who makes health care decisions for me if I don’t name a health care agent

and I am not able to make my own decisions? If you do not have a health care agent, NC law requires health care providers to look to the following individuals, in the order listed below: legal guardian; an attorney-in-fact under a general power of attorney (POA) if that POA includes the right to make health care decisions; a husband or wife; a majority of your parents and adult children; a majority of your adult brothers and sisters; or an individual who has an established relationship with you, who is acting in good faith and who can convey your wishes. If there is no one, the law allows your doctor to make decisions for you as long as another doctor agrees with those decisions.

Part B: Living Will

1. What is a living will? In North Carolina, a living will lets you state your desire not to receive life-prolonging measures in any or all of the following situations: ▪ You have a condition that is incurable that will result in your death within a short period of time. ▪ You are unconscious, and your doctors are confident that you cannot regain consciousness. ▪ You have advanced dementia or other substantial and irreversible loss of mental function.

2. What are life-prolonging measures? Life-prolonging measures are medical treatments that would only serve to postpone death, including breathing machines, kidney dialysis, antibiotics, tube feeding (artificial nutrition and hydration), and similar forms of treatment.

3. Can life-prolonging measures be withheld or stopped without a living will? Yes, in certain circumstances. If you are able to express your wishes, you may refuse life-prolonging measures. If you are not able to express your wishes, then permission must be obtained from those individuals who are making decisions on your behalf.

64

4. What if you want to receive tube feeding (artificial nutrition and hydration)? You may express your wish to receive tube feeding in all circumstances. To do this, you must initial the statement in Section 2 of Part B.

5. How can you revoke this living will? You may revoke this living will by clearly stating or writing in any clear manner that you wish to do so. For example, you may destroy the document, write “void” across the document, tell your doctor that you are revoking the document, or complete a new living will.

Part C: Completing this Document

To make this advance directive legally effective, all three sections of Part C of the document must be completed.

1. Wait until two witnesses and a notary public are present, then sign and date the document.

2. Two witnesses must sign and date the document in Section 2 of Part C. These witnesses cannot be: ▪ related to you by blood or marriage, ▪ your heir, or a person named to receive a portion of your estate in your will, ▪ someone who has a claim against you or against your estate, or ▪ your doctor, other health care provider, or an employee of a hospital in which you are a patient, or an employee of the nursing home or adult care home where you live.

3. A notary public must witness these signatures and notarize the document in Section 3 of Part C.

65

(Please Print)

Part A: Health Care Power of Attorney (Choosing a Health Care Agent) If you do not wish to appoint a health care agent, strike through this entire part and initial here________.

My name is: _____________________________________________________ My birth date is: ____/____/________

1. The person I choose as my health care agent is:

first name middle name last name

street address city state zip code

home phone work phone cell phone e-mail address

If this person is unable or unwilling to serve as my health care agent, my next choice is:

first name middle name last name

street address city state zip code

home phone work phone cell phone e-mail address

2. Special Instructions:

NOTE: In this section, you may include any special instructions you want your health care agent to follow, or any limitations you want to put on the decisions your health care agent can make, including decisions about tube feeding, other life-prolonging treatments, mental health treatments, autopsy, disposition of your body after death, and organ donation. If you need additional space, please use the back of this page.

If you do not have any special instructions for your health care agent, or any limitations you want to put on your agent’s authority, please draw a line through this section.

66

(Please Print)

Organ Donation:

______ (initial) My health care agent may donate my organs or parts after my death. (Please note: if you do not initial above, your health care agent will not be able to donate your organs or parts.)

Part B: Living Will If you do not wish to prepare a living will, strike through this entire part and initial here__________. My name is: ________________________________________________________ My birth date is: ____/____/______ 1. If I am unable to make or communicate health care decisions, I desire that my life not be prolonged by life-prolonging measures in the following situations (you may initial any or all of these choices):

______ (initial) I have a condition that cannot be cured and that will result in my death within a relatively short period of time.

______ (initial) I become unconscious and my doctors determine that, to a high degree of medical certainty, I will never regain my consciousness.

______ (initial) I suffer from advanced dementia or any other condition which results in the substantial loss of my ability to think, and my doctors determine that, to a high degree of medical certainty, this is not going to get better.

2. _______(initial) Even though I do not want my life prolonged by other life-prolonging measures in the situations I have initialed in section 1 above, I DO want to receive tube feeding in those situations (initial here only if you DO want tube feeding in those situations). 3. I wish to be made as comfortable as possible. I want my health care providers to keep me as clean, comfortable, and free of pain as possible, even though this care may hasten my death. 4. My health care providers may rely on this living will to withhold or discontinue life-prolonging measures in the situations I have initialed above. 5. If I have appointed a health care agent in Part A of this advance directive or a similar document, and that health care agent gives instructions that differ from the desires expressed in this living will, then: (NOTE: initial ONLY ONE of the two choices below):

_______ (initial) Follow this living will. My health care agent cannot make decisions that are different from what I have stated in this living will.

67

_______ (initial) Follow health care agent: My health care agent has the authority to make decisions that are different from what I have indicated in this living will.

Part C: Completing this Document (wait until two witnesses and a notary public are present before you sign!) 1. Your Signature

I am mentally alert and competent, and I am fully informed about the contents of this document.

Date: ___________________________ Signature: _______________________________________________________ 2. Signatures of Witnesses

I hereby state that the person named above, _________________________________________, being of sound mind, signed (or directed another to sign on the person’s behalf) the foregoing document in my presence. I am not related to the person by blood or marriage, and I would not be entitled to any portion of the estate of the person under any existing will or codicil of the person or as an heir under the law, if the person died on this date without a will. I am not the person's attending physician. I am not a licensed health care provider or mental health treatment provider who is (1) an employee of the person's attending physician or mental health treatment provider, (2) an employee of the health facility in which the person is a patient, or (3) an employee of a nursing home or any adult care home where the person resides. I do not have any claim against the person or the estate of the person.

Date: _____________________________ Signature of Witness: ______________________________________________________

Date: _____________________________ Signature of Witness: ______________________________________________________

3. Notarization

______________________________________COUNTY, ______________________________________STATE Sworn to (or affirmed) and subscribed before me this day by ________________________________________________________________(type/print name of signer) ________________________________________________________________(type/print name of witness) ________________________________________________________________(type/print name of witness) Date: _______________________________ _______________________________________________________

________________ (Official Seal) Signature of Notary Public

_______________________________________________________, Notary Public Printed or typed name My commission expires:

____________________________________________

68

APPENDIX II: Invitation to Health Care Agent

I would like to prepare a legal document called a health care power of attorney. The purpose

of this document is to appoint a person to make health care decisions on my behalf if I am no

longer able to make those decisions for myself.

I would like to appoint you to serve as my health care agent. To help you decide whether

you can accept this request, I want to give you the following important information about the

duties you would have as my health care agent:

1. Your role as my health care agent would be to make health care choices

for me if I am no longer able to make those decisions for myself.

Therefore, your duties would begin only if and when my physician

determines that I do not have the ability to make health care decisions for

myself.

2. I will provide you a copy of the health care power of attorney document

that appoints you as my health care agent. If I have included in that

document any special instructions for you or any limitations on the

decisions you can make for me, I will tell you about those, and I ask that

you follow those instructions or respect those limitations.

3. If you agree to be my health care agent, I will rely on you to make health

care choices on my behalf if I am no longer able to do so. I ask that you

make treatment choices for me based on my goals and desires about what

kind of care I should receive. It will be very important, therefore, if you

agree to be my health care agent, that we take time to discuss my desires,

goals, and hopes for medical treatment, so that you will know what kind of

care I want.

4. If you agree to be my health care agent, and if I have lost the ability to

make decisions about my health care, you will need to discuss my medical

condition and treatment options with my physicians and other health care

providers. Please ask them for any medical information you need, and ask

them to explain anything you don’t understand. The information they

provide will help you to make informed decisions about what treatment I

would prefer.

5. If you do agree to be my health care agent, you may decide at a later time

that you do not want to continue in that role. If you should decide later

that you do not want to be my health care agent any longer, please let me

know. That will allow me to appoint someone else as my health care

agent.

I accept appointment as your health care agent.

____________________________ (signature)

69

CURRICULUM VITAE

Juris Doctorate, Wake Forest University School of Law

Graduation, Dec 2012

Masters of Arts, Bioethics, Wake Forest University Graduate School of Arts & Sciences

Graduation, Dec 2012

Bachelor of Arts, History, Stetson University

May, 2009

THE PIEDMONT TRIAD REGIONAL ADVANCE DIRECTIVE …PARKER REDMAN A Thesis Submitted to the Graduate...

Documents

Transcript of THE PIEDMONT TRIAD REGIONAL ADVANCE DIRECTIVE …PARKER REDMAN A Thesis Submitted to the Graduate...