the barriers to completing an advance directive: the
TRANSCRIPT
THE BARRIERS TO COMPLETING AN ADVANCE DIRECTIVE: THE PERSPECTIVES
OF HEALTHCARE PROFESSIONALS
David Gregory Page
A dissertation submitted to the faculty of the University of North Carolina at Chapel Hill in
partial fulfillment of the requirements for the degree of Doctor of Public Health in the
Department of Health Policy and Management in the Gillings School of Global Public Health.
Chapel Hill
2018
Approved by:
Sandra B. Greene
John Paul
Gene Matthews
Ashley Smith
Ward Patrick
ii
© 2018
David Gregory Page
ALL RIGHTS RESERVED
iii
ABSTRACT
David Gregory Page: The Barriers to Completing an Advance Directive: The Perspectives of
Healthcare Professionals
(Under the direction of Sandra B. Greene)
This dissertation examines the barriers to completing an advance directive from the
perspective of healthcare professionals who use advance directives routinely. A systematic
literature review and key informant interviews with professionals who routinely handle end-of-life
issues during their normal working routines were completed as part of this research.
The research identified six themes related to barriers to completing an advance directive:
1) provider time constraints; 2) education: patients, loved ones, and healthcare professionals; 3) a
lack of comfort discussing end of life; 4) culture; 5) advance care planning evolvement; and 6)
specialization by non-physicians. With respect to the current environment for reimbursement,
Medicare and some insurance plans currently provide professional reimbursement for counseling
patients on end-of-life decisions and assistance completing an advance directive. Key informants
differ in their opinions as to whether or not the current reimbursement environment will
influence healthcare professionals to increase their efforts to assist patients in the completion of
advance directive documents.
The plan for change to increase the usage of advance directives is described in Chapter Six.
As a member of the UNC Healthcare Advance Care Planning Task Force, I am part of a guiding
coalition that will shape the efforts of the UNC Healthcare system with regard to Advance Care
Planning. The plan for change will include education of both healthcare professionals and patients
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as well as supporting the development of a cadre of non-physician professionals to lead advance
care planning discussions with adults of all ages in several different healthcare settings. Physician
champions will be recruited within the UNC Healthcare system to be trained to provide education
to physicians and non-physician healthcare professionals. Educational materials will also be
developed and partnerships with other organizations will be explored. The UNC Healthcare
Advance Care Planning Task Force will play an important role in executing several components
of the plan for change.
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ACKNOWLEDGEMENTS
Many thanks to my family, friends, and colleagues who provided support, guidance, and
encouragement over the last several years as I worked through the classes leading to this
dissertation and then through writing the dissertation. A special thanks to Dr. Sandra Greene,
whose patience, encouragement, and direction kept me on track and moving forward. A special
thanks to my Mom and Dad whose example as an educator and healthcare professional have
shaped my life. And finally a special thanks to my wife Tanner and daughters Peyton and Anna
whose love and support mean more to me than I can put into words.
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TABLE OF CONTENTS
LIST OF TABLES………………………………………………………………………………. ix
LIST OF FIGURES……………………………………………………………………………….x
LIST OF ABBREVIATIONS…………………………………………………………………… xi
CHAPTER 1: Introduction ............................................................................................................. 1
CHAPTER 2: Review of the Literature .......................................................................................... 9
Search Strategy ........................................................................................................................... 9
Search Strategy ......................................................................................................................... 15
CHAPTER 3: Methods and Plan for Analysis .............................................................................. 18
Research Question .................................................................................................................... 18
Aim 1) ....................................................................................................................................... 18
Methods................................................................................................................................. 18
Aim 2) ....................................................................................................................................... 18
Methods................................................................................................................................. 18
Aim 3) ....................................................................................................................................... 18
Methods................................................................................................................................. 19
Study Participants and Recruitment .......................................................................................... 20
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Analysis and Limitations .......................................................................................................... 22
CHAPTER 4: Results ................................................................................................................... 24
Aim 1 ........................................................................................................................................ 26
1. An uncomfortable topic of discussion .............................................................................. 27
2. Education .......................................................................................................................... 29
3. Time constraints ................................................................................................................ 32
4. Culture............................................................................................................................... 34
5. Advance care planning evolves ........................................................................................ 36
6. Specialization by non-physicians ...................................................................................... 38
Aim 2 ........................................................................................................................................ 39
CHAPTER 5: Discussion .............................................................................................................. 42
CHAPTER 6: A Plan for Change ................................................................................................. 46
Step One – Create a Sense of Urgency ..................................................................................... 47
Step Two – Form a Guiding Coalition ...................................................................................... 49
Step Three – Create a Vision .................................................................................................... 49
Step Four – Communicate the Vision ....................................................................................... 50
Step Five – Empower Others to Act on the Vision ................................................................... 51
Step Six – Create Quick Wins .................................................................................................. 52
Step Seven – Build on the Change ............................................................................................ 52
Step Eight – Institutionalize the Change ................................................................................... 53
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Appendix A: Key Informant Interview Guide .............................................................................. 54
Appendix B: Key Informant Interview Questions ........................................................................ 55
Appendix C: Advance Care Planning Booklet – Patient and Family Education .......................... 57
Appendix D: Advance Care Planning Booklet Contents – Patient and Family Education ......... 58
Appendix E: Process Map Advance Care Planning Claims Flow – ACO Quality Metric ......... 59
Appendix F: Respecting Choices SDMSI Advance Care Planning Educational Material .......... 60
References ..................................................................................................................................... 61
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LIST OF TABLES
Table 1. State laws governing end of life treatments (Kessler & McCellan, 2004). ...................... 3
Table 2. Perceived barriers – patient perspective (Emanuel et al., 1991). ...................................... 6
Table 3. Number of key informants by professional title. ............................................................ 24
x
LIST OF FIGURES
Figure 1. 2011 Medicare spending on patients during the last six months of
life (Kaiser Health News, 2013). .................................................................................................... 2
Figure 2. Healthcare professionals’ attitudes toward advance directives
(Bergman-Evans et al., 2008). ...................................................................................................... 16
Figure 3. Conceptual model for data gathering and research. ...................................................... 19
Figure 4. Key informant experience as measured by years in profession. ................................... 25
Figure 5. Primary work environment of the key informants. ....................................................... 26
Figure 6. Kotter’s (2012) Eight Step Change Model. ................................................................... 46
xi
LIST OF ABBREVIATIONS
ACO Accountable Care Organization
CMS Centers for Medicare and Medicaid Services
CPT Current Procedural Terminology
DNR Do Not Resuscitate
EMR Electronic Medical Record
IRB Institutional Review Board
MOST Medical Orders for Scope of Treatment
MOLST Medical Orders for Life Sustaining Treatment
PSDA Patient Self Determination Act
SDMSI Shared Decision Making in Serious Illness
UNC University of North Carolina
1
CHAPTER 1: INTRODUCTION
The United States spends billions of dollars annually on patients during the last 6 months
of their lives. In 2011, Medicare spending reached $554 billion, which amounted to 21% of the
total spent in the U.S. on healthcare that year. Of that $554 billion, Medicare spent
approximately 28%, or about $170 billion, on patients during the last six months of their lives
(Pasternak, 2013). However, often the patient would prefer not to have aggressive and expensive
measures taken to extend life. A study completed by Dr. Esperanza Donahue (2013) at the
University of Massachusetts at Amherst found that aggressive measures can negatively affect
quality of life in an attempt to increase the quantity of life remaining. In many cases the patient is
incoherent and unable to make decisions. Family members are often unprepared to make difficult
end-of-life decisions, which leaves hospitals and physicians with the current default of taking
aggressive measures in an attempt to extend life or resolve the ailment. This leads to unnecessary
spending and unnecessary difficulty and torment for the loved ones of the patient (Manfredi et
al., 2000).
Advance directives are a means of extending a person’s autonomy beyond the point in
time when the person became incoherent or incapable of making decisions. The Merriam-
Webster dictionary defines a medical advance directive as:
“A legal document (such as a living will) signed by a competent person to provide
guidance for medical and health-care decisions (such as the termination of life support or
organ donation) in the event the person becomes incompetent to make such decisions.”
("Advance Directive,” 2015)
2
Figure 1. 2011 Medicare spending on patients during the last six months of life (Kaiser Health
News, 2013).
The concept of a living will was first introduced in 1967 by an Illinois attorney, Luis
Kutner. Kutner’s idea was to create legal documents that would allow individuals to make their
own decisions regarding the medical care they are to receive at the end of their lives. Walter
Sackett, physician and Florida legislator, introduced the first living will related bill into a state
legislature in 1968. However, Dr. Sackett’s bill failed to pass. A California state senator, Barry
Keene, introduced a bill into the California legislature in 1976 to create living wills. Mr. Keene’s
mother-in-law died of a terminal illness a few years earlier and had been unable to limit her own
medical treatment. Mr. Keene’s bill passed in 1976 and California became the first state with
such legislation. 43 states had considered living will legislation by 1980 and 7 of those states
$384 Billion
$170 Billion
2011 Medicare Spending -Expenditures during the last 6 months of life accounted
for almost 1/3 of total Medicare expenditures
Standard Medicare expenses Last 6 months of life
3
passed legislation. By 1992, all 50 states had passed living will legislation (Table 1). The
American Medical Association and the American Academy of Neurology both publicly endorsed
the use of advance directives by 1992 as well.
Table 1. State laws governing end of life treatments (Kessler & McCellan, 2004).
State
Law provides
incentives for
compliance with
advance
directives
Law requires
delegation of
decisions in absence
of advance
directives
Alabama 1981
Alaska 1986
Arizona 1985 1992
Arkansas 1977 1977
California 1976
Colorado 1985 1992
Connecticut 1985 1985
Delaware 1982
Florida 1984 1984
Georgia 1984 1990
Hawaii 1986 1986
Idaho 1977
Illinois 1984 1991
Indiana 1985 1987
Iowa 1985 1985
Kansas 1979
Kentucky 1990
Louisiana 1984 1984
Maine 1989 1989
Maryland 1985 1993
Massachusetts 1990
Michigan 1990
Minnesota 1989
Mississippi 1984
Missouri 1985
Montana 1985 1991
Nebraska 1992
Nevada 1977 1991
New Hampshire 1985
New Jersey 1992
New Mexico 1977 1984
4
New York 1988 1988
North Carolina 1977 1977
North Dakota 1989
Ohio 1991 1991
Oklahoma 1985
Oregon 1977 1983
Pennsylvania 1992
Rhode Island 1991
South Carolina 1986
South Dakota 1991
Tennessee 1985
Texas 1977 1977
Utah 1985 1985
Vermont 1982
Virginia 1983 1983
Washington 1979
West Virginia 1984
Wisconsin 1984
Wyoming 1984 1984
In 1990 the U.S. Congress passed the Patient Self-Determination Act, which requires all
hospitals and nursing homes that receive reimbursement from Medicare (which includes almost
all hospitals and nursing homes in the U.S.) to ask all patients whether or not they have an
advance directive upon admission. The Patient Self-Determination Act (PSDA) also requires
hospitals and nursing homes to provide patients with information about advance directives if it is
requested. When hospitals and nursing homes ask patients upon admission if they have an
advance directive, if the answer is yes, the advance directive is sometimes scanned or copied and
placed into the patient’s medical record. One of the challenges hospitals and nursing homes face
is obtaining a copy of an existing advance directive and scanning it into a patient’s medical
record. If the patient does not have an advance directive hospitals and nursing homes offer
information describing what an advance directive is. Patients being admitted to hospitals and
nursing homes have lots of things to think about and keep track of, most of the time completing
Table 1 Continued
5
an advance directive or even reviewing information that explains what an advance directive is
drops to the bottom of the priority list. The implementation of the PSDA caused hospitals and
nursing homes to become more aware of advance directives and end-of-life planning. It also
requires hospitals and nursing homes to provide education on advance directives. In spite of
these requirements, the number of Americans who have an advance directive has not
significantly increased since the PSDA was passed in 1990 (Wolf et al., 1992).
A New England Journal of Medicine study found that when people are asked to imagine
themselves incompetent with a poor prognosis, they decide against life-sustaining treatments
roughly 70% of the time (Emanuel, Barry, Stoeckle, Ettelson, & Emanuel, 1991). The same
study found that over 90% of the more than 500 study participants expressed a desire to complete
an advance directive after receiving a brief educational session about advance directive
documents. There was no significant difference in interest based on the age of the participants.
However, a 2006 Pew Research survey found that fewer than 29% of American adults
have an advance directive or living will. A 2014 study published in the American Journal of
Preventative Medicine found that only 26% of nearly 8,000 participants had an advance directive
(Birkman, 2014). Emanuel et al. (1991) found that patients were reluctant to bring up the topic of
advance directives with their physicians and cited three “perceived barriers” for not completing
an advance directive (Table 2).
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Table 2. Perceived barriers – patient perspective (Emanuel et al., 1991).
Perceived Barrier % of Patients Citing
Would discuss if physician took initiative 29%
Only relevant to the sick or elderly 24%
Never thought to raise the topic 14%
Nathan Kottkamp, a healthcare attorney and the founder of National Healthcare
Decisions Day, believes that advance directives are misunderstood and that too many people
equate them with “pulling the plug.” Kottkamp stated, “A living will or advance directive can
say you want every medical treatment known to science applied to you at the end of life, or no
treatment at all, or anywhere on that spectrum.” Kottkamp also believes that many Americans
may be under the impression that advance directives require a lawyer to establish and can be
expensive. Most states have advance directive forms available on state websites and the total cost
should only be the expense of having the documents notarized.
Having a loved one involved in a serious accident or succumbing to an illness is usually a
very difficult time in a person’s life. However, some stress can be removed from the situation if
that loved one has already made end-of-life healthcare decisions. Most people would prefer to
make their own decisions about treatment options at the end of their lives and/or when it looks as
though they have a poor prognosis and may end up with a less than desirable quality of life. An
advance directive is a clear way for a person to make his or her own decisions about end of life
care if he/she should be in a horrible accident or otherwise become incompetent to make
decisions.
Advance directives have the potential to save our country significant amounts of money
while at the same time improving the final months of peoples’ lives and lessening the anxiety
7
and anguish felt by loved ones during those moments. If advance directives make sense to
physicians and people understand what they are – then why do fewer than 30 percent of
American adults have one? It is easy to hypothesize that many Americans do not have an
advance directive because they are unfamiliar with the concept and have not been educated about
the benefits of an advance directive and how to put one in place.
Advance directives are legal documents that become effective after a person is
incapacitated or somehow unable to make decisions for him or herself. Advance care planning is
the process of considering and discussing with loved ones or legal representatives healthcare
values, goals, and things that should be considered when making healthcare decisions at the end
of life. A few of the most common types of legal documents used in advance care planning
include a Do Not Resuscitate (DNR) form, which is a legal document signed by a physician that
states that the patient does not want cardiopulmonary resuscitation performed on them if they
should stop breathing or their heart stops beating. A Medical Orders for Scope of Treatment
(MOST) form, which is a legal document signed by both the physician and patient and also
sometimes referred to as a Medical Orders for Life Sustaining Treatment (MOLST) form, is
effective as soon as it is signed by both the patient and physician. MOST/MOLST forms are
technically not considered advance directives because they become effective when signed and
not at a point in the future when the patient can no longer make decisions, but MOST/MOLST
forms are an important part of advance care planning and discussions concerning end-of-life
medical care. MOST/MOLST forms address cardiopulmonary resuscitation, medical
interventions, such as intubation or mechanical ventilation, as well as the use of antibiotics and
IV fluids. MOST/MOLST and DNR forms are different, but both forms have the same goal of
honoring a person’s wishes for the care he or she receives at the end of life.
8
I have worked in healthcare for 20 years in hospitals and nursing homes. I am interested
in end-of-life care and why Americans, specifically older Americans, do not have an advance
directive. A study of barriers to completing advance directives could be approached from
multiple perspectives: patients, loved ones, care givers, or providers/healthcare professionals.
This study focuses on healthcare professionals who are familiar with and work with advance
directives on a routine basis. What are the perceived and actual barriers to completing an
advance directive from the perspective of healthcare professionals?
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CHAPTER 2: REVIEW OF THE LITERATURE
This is a descriptive literature review focusing on existing information regarding the
usage and barriers to usage of advance directives. A systematic review was performed using a
broad search strategy. Qualitative and quantitative studies were included in this review. Both
descriptive and analytical studies were included. The review was not date restricted or restricted
in any fashion other than the language of the text. The review was conducted during the winter
months of 2015. Only studies and articles written in English were included. The following
databases were the primary focuses in this review:
PubMed
CINAHL
Google Scholar
Search Strategy
The following terms and term combinations were used through “Boolean” AND/OR
search functionality:
Advance Directive OR Advance Directives OR Advanced Directive OR Advanced
Directives
Living Will OR Living Wills
Family Advance Care Planning OR Family Advanced Care Planning OR FACP
And
Barrier OR Barriers
Obstacle OR Obstacles
Challenge OR Challenges
Review and consideration of references from appropriate studies was also used during the search
through applicable literature. An initial search using the criteria and databases described above
10
yielded 422 studies and articles. A review of those
422 documents allowed the most pertinent to be
selected by excluding literature for the following
reasons:
Studies/articles ruled out by title
Studies focused on the challenges associated
with end-of-life care in very specific
disease/patient populations
Literature focused on barriers or obstacles
associated with mental health, such as
dementia or other cognitive challenges
Studies and articles investigating the unique
cultural biases and beliefs of a certain group
of people or a certain geographic region
Literature solely focused on the challenges
associated with Emergency Care and/or
Trauma Care
Paring down the literature using the above criteria
provided 25 studies and articles that were pertinent
to my research. The literature included ranged from
empirical studies and primary data collection
through surveys to a randomized controlled trial
analyzing education of non-demented adults over
65-years-old on advanced directives. Articles
covering how applicable laws and reimbursement
for certain actions and services encourage or
discourage physicians and healthcare providers to
Definition of Key Terms
Advance Directive: Legal
document describing
preferences for future care and
appointing a surrogate to make
healthcare decisions in the
event of incapacity
Advance Care Planning:
Process of considering and
communicating healthcare
values and goals over time
Medical Durable Power of
Attorney: Legal document that
appoints an “agent” to make
future medical decisions.
Becomes effective only when
the patient becomes
incapacitated
Surrogate or Proxy: A decision
maker who makes medical
decisions after a person
becomes incapacitated if the
individual did not previously
identify a medical durable
power of attorney. Most states
use a hierarchy system to
designate a healthcare proxy,
whereas a few states appoint a
proxy who is agreed upon by
all interested parties
Living Will: Document
containing an individual’s
wishes regarding initiating,
withholding, and withdrawing
certain life-sustaining medical
interventions
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discuss advance directives with their patients were included. The majority of included studies
and articles were from peer-reviewed and well-respected medical journals. Articles included in
this literature review fell into three different categories:
1. Education/lack of education of physicians and healthcare professionals and/or the
challenges that physicians and healthcare providers face with advance directives;
2. Education/lack of education of the public and or patients about advanced directives and
the challenges associated with patients (the public) in completing advance directives; and
3. Politics and the political challenges surrounding advance directives and end-of-life care.
Advance directives were discussed and debated by the U.S. Congress during the late
1980s and early 1990s. In 1990, 22% of Medicare spending was spent on 6% of Medicare
recipients during the last 12 months of their lives ( Kessler & McCellan, 2004). Congress passed
the PSDA in 1990 and it was implemented in 1991. The PSDA requires all hospitals, nursing
homes, and assisted-living facilities that receive Medicare reimbursement to ask patients upon
admission whether or not they have an advance directive. The PSDA also requires facilities to
ask patients if they would like to learn more about advance directives and provide them with
education about the documents (Nolan & Bruder, 1997). The PSDA was intended to increase
knowledge and awareness about advance directives and to increase their usage (Cugliari, Miller,
& Sobal, 1995).
However, the PSDA has not succeeded in increasing the usage of advance directives
(Basile, 2002; Bergman-Evans, Kuhnel, McNitt, & Myers, 2008; Kring, 2007) Since the passage
of the PSDA, little has been done to enforce the initiative and or further educate the public about
advance directives (Donahue, 2013). Studies indicate that patients prefer to learn about advanced
directives outside of the hospital setting (Nolan & Bruder, 1997). A study conducted by Nolan
12
& Bruder found that many study participants felt that the best time to discuss advance directives
was during a well visit to a physician before the age of 50. Studies show that hospitals that
provide information about end-of-life planning prior to the day of admission saw more patients
complete an advance directive than hospitals only providing this information on the day of
admission (Cugliari et al., 1995). A study conducted by Cugliari et al. suggests that hospitals are
not the right setting in which to discuss advance directives. Of the 419 participants in the
Cugliari study, the overwhelming majority preferred to discuss advance directives in an office
visit setting (70%) versus an inpatient hospital stay (14%). Another study in a hospital setting in
Atlanta, Georgia found that for every 1000 patients admitted to the hospital, fewer than 75 asked
for additional information about advance directives and fewer than 50 completed an advance
directive (Haynor, 1998). The PSDA requirement that hospitals, nursing homes, and assisted-
living facilities ask patients during the admission process if they have an advance directive and
provide more information if it is requested has not been effective in increasing the usage of
advance directives (Murphy, Sweeney, & Chiriboga 2000).
Brown (2012) found that one of the most commonly perceived barriers to the completion
of advance directives is an “unfamiliarity” or lack of awareness about end of life planning and
advance directives by the public. Brown believes that our focus should be shifted from, “should
we use advance directives,” to “how can we best use advance directives.” Another commonly
cited barrier to completing advance directives is the assertion that death and dying, especially the
death of a loved one, is a difficult topic for many people to discuss. Often times loved ones and
family members are unwilling to discuss death and dying (Clarke, Korotchenko, Bundon, 2012).
Some individuals have expressed that they feel discussing death, dying, and advance directives
might stifle the hope and efforts of a sick or ailing loved one to recover (Haynor, 1998). Several
13
studies have shown that people believe that physicians should initiate a discussion about end of
life planning during an office visit, ideally before any serious health problems have been
identified (Glick, Mackay, Balasingam, Dolan, & Casper-Isaac, 1998; Markson, Fanale, Steel,
Kern, & Annas, 1994; Nolan & Bruder, 1997). Dr. Felicia Cohn, Director of Bioethics for Kaiser
Permanente, stated, “We need to reframe the [advance care planning] discussion as a matter of
choice and empowerment rather than death and dying.” Having an advance directive in place
reduces the stress and anxiety felt by loved ones during and after a patient’s death (Detering,
Hancock, Reade, & Silvester, 2010). When asked, most people say that making end of life
healthcare decisions for themselves would be much easier than making end of life healthcare
decisions for a loved one (Emanuel et al., 1991). Another barrier to completing an advance
directive appears to be an exposure to and understanding of end-of-life planning. Individuals
with higher levels of education are much more likely to have completed an advance directive
(Basile, 2002). Additionally, most advance directives are written at a 12th grade level, which can
be a barrier for people whose reading abilities fall below that (Donahue, 2013; Kring, 2007).
Kring (2007) determined that the greatest barrier to completing end-of-life planning is the
lack of communication about advance directives between patients and healthcare professionals.
Historically, medical and nursing schools have not educated their students about end-of-life
decisions and how to navigate the emotionally charged topic of advance directives. Physicians
and healthcare professionals indicate that the two most significant barriers to discussing advance
directives with patients are a lack of time and a lack of training on how to tackle the subject
matter (Donahue, 2013; Kring, 2007). Kring believes that nurses should play a primary role in
discussing end-of-life planning with patients and their families and facilitate the completion of
advance directives. The American Nurses Association supports the idea that nurses are critical
14
participants in end-of-life planning and should help patients, families and physicians with the
completion of advance directives (Later & King, 2007). Many healthcare professionals believe
that the primary care physician office setting is the appropriate place in which end-of-life
planning discussions should occur (Donahue, 2013; Glick et al., 1998). Primary care physicians
and other healthcare professionals can overcome barriers and initiate effective discussions about
advance directives in the physician office setting (Later & King, 2007). Markson et al. (1994)
stated that “the key to increasing patient use of advance directives appears to be overcoming the
reluctance of physicians to raise the subject.” Physicians believe three barriers to completing
advance directives include a lack of time, comfort with the topic, and reimbursement for
discussing the topic with patients (Spoelhof & Elliott, 2012).
While I was completing this literature review, the Centers for Medicare and Medicaid
Services (CMS) authorized reimbursement for healthcare professionals for facilitating end-of-life
planning discussions with patients. The new reimbursement rules went into effect on January 1,
2016. I completed another time-bound literature review on reimbursement for end-of-life
planning because of how this new Medicare reimbursement may affect end-of-life planning and
the popularity of advance directives. I limited this literature review to articles and studies
completed during 2012 and later. The same databases used in my first literature review were
again the primary focuses in my second literature review:
PubMed
CINAHL
Google Scholar
15
Search Strategy
The following terms and term combinations were used through “Boolean” AND/OR
search functionality:
Reimbursement OR Payment OR Compensation
Advance Care Planning OR Family Advanced Care Planning OR end of life planning
AND
Medicare OR CMS OR Centers for Medicaid and Medicare Services
An initial search using the criteria and databases described above yielded 31 studies and articles.
I was able to select 12 articles that were relevant and focused on the new Medicare ruling that
went into effect in January of 2016. The literature shows that regardless of whether or not there
is reimbursement for advance care planning discussions, there is sometimes nothing more
challenging for many physicians and nurses than talking with patients about dying and end-of-
life planning (Emanuel et al., 1991; Halpern & Emanuel, 2015). Some physicians and experts are
pushing for advance directives to be discussed with and during the informed consent process
(Kirkpatrick, Hauptman, & Goodlin, 2015). The American Medical Association and American
Nurses Association endorsed and support reimbursement for advance care planning (Boswell,
2015). Many physician and healthcare professional groups are calling for training programs
focused on this topic (Halpern & Emanuel, 2015).
Hospitals and nursing homes often build the question, “Do you have an advance directive
or living will?” into the standard admission process and task admission clerks with asking the
question and then providing more information and education if it is requested. If we assume that
16
the intention of the PSDA was to increase the usage of advance directives, then the PSDA has
not been successful (Basile, 2002; Bergman-Evans et al., 2008; Haynor, 1998).
Bergman-Evans et al. (2008) analyzed how 413 healthcare professionals perceived the
usefulness of advance directives. More than 72% of participants believed advance directives to
be either “fairly useful” or “very useful” and less than 5% of participants believed advance
directives were “minimally useful” or “not useful at all” (Figure 2).
Figure 2. Healthcare professionals’ attitudes toward advance directives (Bergman-Evans et al.,
2008).
The articles identified show that both healthcare professionals and the general public
need more education on advance directives (Emanuel et al., 1991, Halpern & Emanuel, 2015).
These articles also indicate that the PSDA has not significantly increased the usage of advance
directives in the United States (Basile, 2002; Bergman-Evans et al., 2008; Haynor, 1998). None
of the articles found in these literature reviews focused specifically on why end-of-life
discussions are so difficult or explored strategies and approaches that can be used to make those
discussions easier. Extensive knowledge and experience with advance directives and end-of-life
planning is not common amongst healthcare professionals (Halpern & Emanuel, 2015). The level
of comfort healthcare professionals have regarding discussions about end-of-life and advising
0
50
100
150
200
Staff perception
# o
f p
rofe
ssio
nal
s
Healthcare Proffessionals' attitudes toward AD
Not Useful at all Minimally Useful Somewhat useful Fairly useful Very useful
17
patients to potentially forego some types of interventions toward the end of life can also be very
challenging (Halpern & Emanuel, 2015). None of the articles provided a road map for how to
increase the usage of advance directives.
I am interested in why more Americans do not have an advance directive. The primary
focus of my study is on the barriers and challenges encountered by physicians and other
healthcare professionals when dealing with advance directives. My research includes key
informant interviews with healthcare professionals within the state of North Carolina.
18
CHAPTER 3: METHODS AND PLAN FOR ANALYSIS
Research Question:
What are the barriers to completing an advance directive from the perspective of
healthcare professionals?
The three aims of this research study are:
Aim 1)
What are the barriers to completing an advance directive?
Methods. Conducted a systematic literature review on barriers to completing an advance
directive and conducted key informant interviews with professionals who routinely handle end-of-
life issues during their normal working routines.
Aim 2)
What is the current environment for healthcare professional reimbursement for counseling
patients on end of life decisions and assistance completing an advance directive?
Methods. Conducted a systematic literature review on healthcare professional
reimbursement for counseling patients on end-of-life decisions and assistance completing an
advance directive. Additionally, conducted key informant interviews with professionals who
routinely handle end-of-life issues during their normal working routines.
Aim 3)
How can those barriers be overcome and how can the usage of advance directives be
increased?
19
Methods. Conducted key informant interviews with healthcare professionals who
routinely handle end-of-life issues during their normal working routines. Developed a plan for
change using the results and data collected through the methods and analysis described above.
This literature review was completed to search for all relevant articles and studies. The purpose of
reviewing the literature was to gain insight into the current understanding and published articles
regarding the barriers to completing an advance directive. The information gleaned from the
literature review was also used to inform the interview questions used in key informant interviews
with subject matter experts. A qualitative research study was chosen in order to gain specific
insights into the day-to-day challenges healthcare professionals face when working with end-of-
life planning and advance directives.
The information gathered in my literature reviews was used to inform questions used in
key informant interviews. The literature reviews and key informant interviews are the core
components of this qualitative research. Figure 3 illustrates the conceptual model of the research
design.
Figure 3. Conceptual model for data gathering and research.
Literature Review on barriers to completing Advance Directives
Literature Review on reimbursement for End of Life Planning / Advance Care Planning
Key Informant Interviews
Any additional research based on Key Informant Interviews
Synthesis of the literature reviews and Key Informant Interviews
20
The conceptual model shows the progression and flow of the research and how I
approached and synthesized the data from each stage of the study. I completed two literature
reviews, one on the barriers to completing an advance directive and one on professional
reimbursement for end-of-life planning. I then used the data gathered in the literature reviews to
develop interview questions for my key informant interviews. I completed 15 face-to-face key
informant interviews with healthcare professionals. After the key informant interviews I conducted
some research on the data gleaned during the interviews. The last step was to pull together the data
gathered in the literature reviews and combine it with the information recorded during the key
informant interviews.
The research design and question guide was developed and submitted to the University of
North Carolina (UNC) Institutional Review Board (IRB Study #15-2881) for approval and
approved in 2017. The interview guide contained open-ended questions, with each key informant
being asked the same questions. The interview guide and full set of interview questions are
available in Appendices A and B.
Study Participants and Recruitment
Study participants were healthcare professionals and other professionals who have
experience working with advance directives and working with patients and their families to get
advance directives completed. I recruited participants from different care settings and professional
settings across the state of North Carolina. I interviewed healthcare professionals in large academic
medical centers and community hospitals in various locations throughout the state. I also
interviewed healthcare professionals in nursing homes, and continuing care retirement
21
communities within North Carolina. Fifteen key informant interviews were completed as part of
this study. Key informants included:
Physicians
Nurses
Nurse Practitioners
Physician’s Assistants
Social Workers
Healthcare Administrators
I have worked in North Carolina for the past 7 years and using my professional networks I
recruited key informants for the interviews. Potential subjects were contacted by phone, email, or
in person to request their participation, at which time a brief description of the study was shared
using a standardized script in English. When participants agreed to be interviewed, an appointment
was scheduled at a time convenient for the key informant. The interviews took place in a private
setting and were conducted face-to-face. All sessions were recorded with participant permission.
The principal investigator obtained written consent from the participant at the time of the face-to-
face interview. The consent form was reviewed orally by the principal investigator and the
participant was given the opportunity to ask questions about the study. Study participants were
consented and interviewed in English. All study procedures were described in detail such that the
participants were fully informed of their requirements while in the study. During this consent
process, the participants were reminded that they were free to choose whether or not to take part
in the research study. The participants were given the opportunity to decline to participate in the
study. During the consent process, all participants were informed that the information they
provided during the interview was confidential (i.e., not shared with anyone outside of the research
team) and voluntary (i.e., they were not obligated to answer each question). Interviewees were told
22
that they were free to take breaks and/or terminate the interview at any time. Privacy risks and
confidentiality were addressed as follows:
1. All interviews with participants were conducted in locations of the interviewees
choosing.
2. Identification numbers, rather than names, were used on research materials to identify
participants.
3. Hard copies of data and collateral materials, such as consent forms, were stored in a
locked cabinet by the principal investigator.
All interview data were stored in password-protected files on a computer in the principal
investigator’s office. Once the data were analyzed and the study completed, all recordings were
destroyed to ensure that no responses would be linked to an individual. The results are presented
in aggregate and the names of the individuals have been kept confidential. Descriptors of key
informants are included, but in order to maintain confidentiality of the respondent, the participants’
names are not included. Using literature reviews and key informant interviews as my primary
research mechanisms resulted in a qualitative research study.
Analysis and Limitations
I recorded each key informant interview and had transcripts of the interviews printed. I
then manually analyzed the qualitative data pulling out key concepts, themes and ideas.
A limitation of this study was the qualitative nature of key informant interviews. I
conducted these interviews as a student in the Doctorate of Public Health program at UNC and not
as a healthcare professional representing any particular organization. Another limitation was that
23
even with me explaining that I am a student at the beginning of interviews some key informants
may have consciously or subconsciously treated me and or the interview questions a certain way
because of my professional background and or position as a healthcare administrator with UNC
Rex Healthcare. A limitation of personal and professional bias was also considered. For example
a social worker or nurse may believe that physicians should be the driving force in the completion
of advance directives while a physician may believe that nurses or social workers should be the
driving force.
24
CHAPTER 4: RESULTS
Between November of 2017 and March of 2018 I completed 15 face-to-face key
informant interviews with healthcare professionals in North Carolina. My key informants were
physicians, nurses, advance practice nurses, social workers and administrators, the distribution of
which are shown in Table 3.
Table 3. Number of key informants by professional title.
Physician Nurse Advanced
Practice Nurse
Administrator Social Worker
5 2 2 3 3
The three aims of my research were:
Aim 1) What are the barriers to completing an advance directive?
Aim 2) What is the current environment for healthcare professional reimbursement for
counseling patients on end-of-life decisions and assistance completing an advance
directive?
Aim 3) How can those barriers be overcome and how can the usage of advance
directives be increased?
The questions used in each interview are included in Appendix B. The interviews
occurred in different locations of the key informants’ choosing. Most of the interviews lasted 25
to 35 minutes. The interviews were recorded and then transcribed. Each transcript was then
printed.
25
The key informants I interviewed had varying degrees of experience in their respective
professions. Their years of experience ranged from 4 years to over 25 years. Figure 4 shows how
many years of experience the key informants have in their given specialties.
Figure 4. Key informant experience as measured by years in profession.
The primary work environment of the key informants also varied, with 40% working
primarily in skilled nursing and hospital environments, 27% working primarily in an outpatient
environment, 20% working primarily in a hospice environment, and 13% working primarily in
an elder care home environment (Figure 5). The variation in profession, years of experience, and
primary work environment provided me with differing perspectives regarding end-of-life
planning and work with advance directives. Each key informant was very forthcoming and none
of them were concerned about being recorded or about their ideas or insights being
misrepresented or used in an untoward manner. A few of the interviews contained the names of
specific individuals, such as colleagues or patients. Those names and any information that could
0
2
4
6
8
Years in Profession
Key Informant Experience as measured by years in profession
0 to 6 7 to 12 13 to 18 19 +
26
identify my key informants or any persons mentioned in the interviews were not included in this
dissertation.
Figure 5. Primary work environment of the key informants.
Aim 1
I read each transcript carefully and identified themes that were mentioned. The six
themes that emerged were: 1) a lack of comfort discussing end of life; 2) education: patients,
loved ones and healthcare professionals ; 3) provider time constraints; 4) culture; 5) advance care
planning evolvement; and 6) specialization by non-physicians. After identifying the themes, I
highlighted them in each transcript, color coding the themes. I manually coded the data using
Creswell’s eight steps for coding the qualitative data, which included 1) Reading all transcripts
to get a sense of the whole; 2) working through each transcript document intensively; 3) making
a list of topics; 4) applying this list to topics and adjusting as necessary; 5) reorganizing topics as
appropriate; 6) creating codes; 7) performing a preliminary analysis; 8) recoding as necessary
(Creswell, 2014, p. 198). The six themes are discussed below in order of importance:
0
2
4
6
8
Primary Work Environment
Primary Work Environment of Key Informants
Outpatient Clinic SNF / Hospital Hospice Elder Care Home
27
1. An uncomfortable topic of discussion
Several of my key informants mentioned advance care planning being an uncomfortable
topic of discussion. End of life discussions can push physicians and healthcare professionals as
well as patients out of their comfort zones. One informant said,
“A person’s healthcare provider may not be comfortable having this conversation. A lot
of providers worry that either the patient is going to [get upset] if the topic of advance
directives is brought up or that the patient may feel the provider is giving up on them…”
Many people do not think about end-of-life planning and or advance directives or the fact that
most physicians, physician assistants, and nurse practitioners do not receive any formal training
about how to initiate an end-of life planning discussion or how to introduce the idea of
completing an advance directive to a patient. Many healthcare providers find it difficult to
initiate end-of-life planning discussions. It is easy to assume that physicians and healthcare
providers are comfortable talking about death and the decisions that need to be made toward the
end of life, but many physicians and healthcare providers are not comfortable with those
discussions. One provider told me, “People want to focus on life and living, not on death and
dying.” Another provider said, “No doctor, including myself, wants to be seen as someone who
takes away hope.” That is an eye-opening quote and reveals why end-of-life planning can be
such a difficult topic for many healthcare professionals to raise. Key informants made it clear
that many healthcare providers find it difficult and uncomfortable to initiate discussions with
patients and their loved ones about end of life. Another quote from a key informant was,
“There are some families that aren’t ready to talk about those things, it’s a very difficult
conversation to have. I think patients and providers are both scared to have
conversations about end-of-life, or about goals of care. Certain providers might not see it
28
within their scope of practice. Patients sometimes just don’t want to have the
conversation.”
A healthcare provider sharing his or her opinions about end-of-life decisions and what is best
under specific circumstances is a gray area. Test results or the statistics of survival given a
certain diagnosis with specific comorbidities can be black and white and easier to discuss with a
patient. One healthcare provider shared:
“I think some providers are not comfortable sharing their opinions with patients, so they
might say, ‘What is your code status?’ and the patient may respond ‘I’m a full code,’ and
the provider may not think that is a good idea, but they don’t provide a counterbalance of
‘Are you sure that is what you want?’ More providers need to feel empowered to say,
‘Hold on, I’m really concerned about putting you on dialysis or about making you a full
code. Let’s discuss the risks and benefits here.”
The quotes from my interviews on this topic were numerous:
“Most people don’t want to think about their own terminality.”
“Many [providers] avoid the issue. A lot of physicians aren’t skilled or comfortable with that
discussion.”
“Some families avoid it like the plague. The family member is declining, losing weight, has
serious health issues and the family remains very optimistic. And you have to kind of respect
what they want and what they are saying.”
One key informant definitely believed providers have a hard time bringing up advance
directives and end-of-life planning, relating it to culture:
29
“I think it’s cultural. I think it’s uncomfortable to raise end-of-life issues. So in the world
of dementia, it’s hard for [physicians] to get out of their comfort zone to go beyond ‘mild
cognitive impairment.’ So they’ll send people out of their office with a diagnosis of ‘mild
cognitive impairment’ when it’s way past mild cognitive impairment. So I think it is a
hesitancy to push patients into uncomfortable territories and [providers] not wanting to
push themselves into the uncomfortable territory.”
2. Education
Education was a common theme throughout my interviews, both the education of the
general public and of healthcare providers. Most people do not understand what advance
directives are and what they are not. One of my key informants said, “There is a lot of education
needed on this subject. Many people believe that if you have an advance directive, it means you
want comfort care only and that you are a DNR. A lot of education is needed.” Physicians and
healthcare providers also need education in the area of end-of-life planning and advance
directives. Healthcare professionals need to not only understand what end-of-life planning and
advance directives are, they need training on how to approach end-of-life planning conversations
with patients and their families and how to frame discussion topics. An informant told me that as
he educates patients and families he talks about the need for an advance directive “in the future.”
He said he believes mentioning the need for an advance directive in the future makes the
discussion easier. When talking with patients he says, “This is something you should probably
get into place now so that when it really becomes important at some point down the road, it will
already be in place.”
One of my key informants is working on educating physicians about end-of-life planning
and end-of-life discussions with patients and families. The informant told me,
30
“I am working on developing a way to standardize advance care planning in the
outpatient world. I’m working on how it can be better incorporated into the training of
primary care physicians and how it can be included in the standard workflow. Part of
what I’m looking at is how to train physicians to have goals regarding their advance care
planning discussions.”
The informant went on to explain that physicians or the person leading an advance care planning
discussion should have a goal for that discussion. The goal could be simply to be sure the other
person(s) understands what advance directives are, or the goal could be to get the person to
choose which type of advance directive is most appealing, or the goal could be to get an advance
directive completed.
Another informant told me, “Some patients and families need to understand that it isn’t
necessary to spend your last days in agony or with labored breathing.” Education about end-of-
life care and palliative care is just as important as education about advance directives. One of my
subject matter experts said, “Education is key, for most people it is a lack of understanding.
Usually once advance care planning has been explained, they respond, ‘that makes sense,’ and 8
out of 10 will do it.” Another key informant said,
“Most of the people we provide services for don’t know what advance directives are. We
introduce them to advance care planning. We are looking at the possibility of setting up
small group sessions to look at specific pieces aspects of the caregiving journey,
including advance directives.”
Small group sessions for education is an interesting idea and may work well in certain settings.
Members of the group may benefit from hearing the questions and topics raised by other
members of the group.
31
When asked, how do you address the barriers to completing an advance directive, one of
my key informants responded, “Basically, knowledge is power, and trying to explain the severity
of the illness and try and explain the quality of life and trying to bridge that gap and help people
understand the quality versus quantity piece.”
During a few of my interviews the concept of a two-step approach arose. The two-step
approach is approaching the goal of getting an advance directive completed as a two part
process: 1) an educational discussion about end-of-life planning; and 2) on a separate date,
meeting to complete an advance directive. A key informant confidently stated,
“I am very comfortable prioritizing advance directives. I am very comfortable in
particular with spending an entire office visit focused on advance directives and not
anything else. I have found the most [effective] way to overcome the barriers is to set
expectations, whether it is a clinic visit or a visit in a hospital room, set expectations,
usually in a two-visit sequence. ‘Today I’m going to show you an advance directive and
we’re going to talk through what they are. If we agree that it’s something you want to do,
we will set up an appointment where that’s what we do [and we won’t do anything else
during that visit].”
That key informant believes that the two-step or two visit approach works very well and gives
the patient and/or family time to digest and process what advance directives are and what end-of-
life decisions they would like to make. Another informant stated,
“I try to have a sit down meeting with the patient and family and explain things to ensure
they understand what advance directives are. And I let them know that they do not have
to make any decisions right away, not at this moment, but I leave information with them
32
and information that describes other people’s experiences so that they have some
material to help them make decisions.”
One informant commented,
“There’s culture and education. To tell you the truth, I think that people should be having
conversations about end of life decisions in high school. We teach kids how to balance a
check book, we should be broaching this subject in high school, and touch on it again
while they are in college and then again as a young adult. We talk about organ donation.
We should be talking about this stuff. We plan for retirement, we plan for our kids to go
to college but we’re not planning for the one thing that is guaranteed to happen – which
is end of life.”
3. Time constraints
The majority of the key informants mentioned time, and specifically the amount of time
required to have a proper discussion about end-of-life planning and advance directives, as a
barrier. The key informants told me that physicians (and nurse practitioners and physicians
assistants) today are required by managed care organizations and other stakeholders to complete
so many different tasks during patient visits that end-of-life planning and advance directives are
generally not discussed. Most patients want to discuss their discomfort or their ailment and how
their immediate quality of life can be improved as quickly as possible. One provider told me,
“…most providers have 15 minutes to talk about a really long list of problems…. While
advance care planning is very important, patients are more concerned about why their
legs hurt, or their back hurts, or whatever else they have going on…. advance care
planning drops off the list…”
33
Another provider said,
“It is hard…. I think it is a time issue because we have all these other [requirements]…
we have to do certain things for the medical charting and other things….. it is just one
more thing and we just can’t do it.”
Most physician schedules are built with 15 minutes allotted for each patient interaction. One
provider said,
“I know you’re going to hear this in all of your interviews – Time. The time to dedicate to
[advance care planning] in competition with all of the other things that need to get done
– prioritizing it. Almost by its very nature, it is a preventative intervention. It is not an
acute or urgent intervention, which makes it harder to prioritize.”
The provider went on to explain that she is very comfortable prioritizing advance directives and
very comfortable devoting an entire office visit or even an hour or more to it. She said,
“If the patient and I agree that it is something that should be done, then we’re going to
set up an office visit where that is the only thing we do. We won’t deal with blood
pressure and we won’t deal with other healthcare problems. We just focus on [advance
care planning]. I find that makes a big difference. It makes things much simpler.”
This provider also mentioned that she is somewhat rare in her training and her comfort level
discussing end of life. This provider’s approach to overcoming the time barrier, “is to set
expectations, usually in a two-visit sequence.” During the first visit she shows the patient and
family an advance directive and explains what they are and why they are important. If the patient
or family is interested, then a follow-up appointment will be set to complete the
document/advance directive that was chosen. Another key informant mentioned, “Advance care
34
planning just isn’t a high priority for most patients or providers and therefore there is not a lot
of time made for it.”
4. Culture
Culture as a theme taken from the key informant interviews can be broken down into the
American culture as a whole, racial or ethnic cultures and the culture of healthcare professionals.
The American culture is continually evolving and has a great diversity within it. Historically,
Americans have been fiercely independent and we pride ourselves on our resilience. Our
founding fathers fought for our independence. We love a good comeback story and have the
utmost respect for the “never say die” attitude. End-of-life discussions are difficult because we as
a country have a culture of never quitting, never saying die. Americans hate losing with a
passion. One of my key informants told me, “We as a society do not talk about death. We do not
talk about dying. We do not talk about disability.” We as Americans generally do not talk about
death or dying or disability because they represent losing, losing life, or losing the ability to do
something independently.
When I asked why those barriers exist, many of the key informants included culture in
their answers. One responded, “I think it is culture, personal family experience, how they grew
up, and their experience over the course of their lives and religious background.” Another
stated, “I think there are a lot of cultural factors that go into advanced care planning that are
hard to understand.” One key informant told me a story from his early years practicing
medicine. He referred to the story as the, “did you do everything story.” He believes the story
may explain part of the reason some communities and cultures within the American culture push
for doing everything possible at the end of life. He said after completing his residency he had an
35
obligation to work in an underserved community. He worked in an African American community
in the south and he distinctly remembers one elderly female patient who was very old and dying.
She had cancer and never entered a hospital. He made house calls on her several times over the
last 90 days or so of her life.
“Every time I visited her there were five or six women there taking care of her. Taking
care of every possible need she had. There was no hospital, no visiting nurses, no
medical professionals. Her friends and family did everything for her.”
This woman’s friends and family gave her medicine, fed her, helped her on and off a bed pan,
cleaned her, and more. Her community could rightfully say they “did everything” for her. The
key informant told me that years later an African American nurse that he worked with lost her
mother to cancer. He told me he can remember several other African Americans that worked in
the office asking the nurse, “Did you do everything?” He went on to say, “In today’s world
doing everything includes intensive care, intubation, drips, pressers and tube feeding, it’s taken
on a different meaning of do everything.” The children and grandchildren who grew up in that
small African American community saw, heard about, and sometimes played a role in doing
everything possible for someone in the community who was dying. Those children grew up
hearing the adults talk about taking care of people at the end of their lives and doing everything
they could for people who were dying. He said, “40 years ago, ‘doing everything’ for someone
at the end of their life meant something very different than it means today.”
Healthcare professionals in the U.S. have a culture of their own and like other cultures it
is constantly changing and evolving. Change and evolution can be uncomfortable. One of the key
informants shared, “I think a lot of the barriers have to do with a cultural bias to stay away from
the topics of end of life.” He went on to say,
36
“The medical culture for physicians is similar to our overall culture, it’s uncomfortable
to raise end-of-life issues. ‘Oh he’s not ready for hospice’ or ‘Oh they’re not ready for
the MOLST form’ – Everybody should have a MOLST form and a healthcare [power of
attorney].”
5. Advance care planning evolves
One of the key informants explained that within a week or two after being discharged
from a hospital stay is a good time to discuss advance care planning. She explained that the
inpatient hospital experience is still fresh in the person’s mind and they have a much better feel
for what is means to have a central line put in or to be resuscitated or have blood transfusions.
She said it is common for a person to choose to have fewer life preserving measures included in
their advance care plans after a hospitalization, especially if they recently experienced a few
invasive procedures for the first time. She also explained that it is also pretty common for that
same person to put a few life-prolonging measures back into their advance care plans 18 to 24
months after a hospitalization, but she said rarely do people get back to the same level of life
preserving measures they had in place before a major hospitalization, even after the passage of a
few years.
One of the key informants stated,
“One challenge as it relates to end of life planning is that you can talk with someone who
is 60, or we’ll say 70, who has basically 98% of their vitality and health and you ask
them, if you were unable to speak and move your right arm, they may say – I’d rather be
gone than in that situation. Now if you take that same person 5 years later and they’ve
had a small stroke that has affected their left arm and required them to go through
37
speech therapy to regain 90% of their speaking skills, their feelings and end of life wishes
change. Advance care planning evolves as we age. Advance care planning has to be
revisited over time.”
The same key informant believes that around age 50 is the right time to begin advance care
planning discussions. He said for a person in good health there should be no more than a few
minutes spent on the topic. He said he likes to ask his patients who are 50 years old and older,
“Have you thought about advance care planning? Do you want to talk about it?” He said he
believes that just mentioning it and planting the seed at around 50 years of age makes sense to
him because people’s perspectives and what they are willing to accept in terms of quality of life
and functionality can and often does change quite a bit in their 60s, 70s, and beyond. Another
key informant told me,
“Advance directives are only one part of a bigger process. Both clinicians and patients
need to understand that this is not a one and done type of thing. A wonderful colleague
taught me that an advance directive is an invitation or an entry point into a conversation
that changes over time and should be revisited once or twice a year for many, many
years. Advance care planning is a process, not a one-time discussion.”
Another challenge as it relates to completing an advance directive is that there are so
many different types of advance directives. Completing an advance directive is not a yes or no
decision. One of my key informants told me that simplification would greatly improve
understanding and the completion rate of advance directives. That key informant suggested,
“doing away with the DNR.” He prefers the MOST form.
38
6. Specialization by non-physicians
Several of the key informants mentioned that they think professionals other than
physicians should be leading the charge on advance directives. Social workers, nurses, and health
educators were all mentioned as potential professional titles of people who could specialize in
helping others understand and complete an advance directive. One key informant said,
“Physician practices need ancillary staff members to take this task and specialize in it.
Blue Cross and Blue Shield in Missouri is doing that sort of thing for mental health. If
there is a patient suffering from chronic issues related to obesity or drug use they are
taking that out of the physician’s realm and giving it to say, a social worker. The
physician can say I’m done with the clinical assessment I’m now going to ask [this other
person] to come spend some time with you.”
Another key informant said,
“This may sound odd but it sort of takes a team or a village to have meaningful
interactions with patients. The doctor may explain to patients the likely outcomes of life
sustaining treatments or answer medical questions while much of the other aspects of
communication around advanced directives might be very appropriately handled by a
social worker or a counselor or somebody who isn’t necessarily medically focused but
can talk about how all this works.”
Another key informant commented,
“I’m thinking about the outpatient setting but this would work on the inpatient side too, I
would empower special counselors in clinic settings to have the job of counseling people
about advance directives. They might be social workers, they might be nurses, they might
be health educators, and I would empower them to take the lead. Physicians could be
39
available or consulted for medical questions, but let these special counselors take the
lead on advance directives.”
An informant expressed the following rationale as one reason professionals other than physicians
may be effective advance care planning specialists, “Social workers or nurses or PAs are more
adept at fielding questions and making referrals regarding estate attorneys or financial planning
than physicians.” Another key informant said, “I think social workers, who are working with
these patients in many instances and see the patients over and over again, should be trained to
have these conversations about end of life and advance directives.”
Aim 2
In January of 2016, Medicare started reimbursing providers for having advance care
planning/end-of-life planning discussions with patients under current procedural terminology
(CPT) codes 99497 and 99498.
“Effective January 1, 2016, Medicare will pay $86 for 30 minutes of [advance care
planning] in a physician's office and will pay $80 for the same service in a hospital (CPT
billing code 99497). In both settings, Medicare will pay up to $75 for 30 additional
minutes of consultation (add-on CPT billing code 99498).” (Zeitoun, 2015)
One of the questions I asked during my key informant interviews was whether or not my subject
matter experts were aware that Medicare reimburses for advance care planning, and whether or
not they believed that the reimbursement would influence more providers to initiate advance care
planning discussions with their patients. A lack of time and comfort with end-of-life discussions
seemed to outweigh current reimbursement levels. One response was, “I know Medicare now
reimburses for it. I still don’t have the time to do it, I just don’t.” Another telling quote from a
40
provider was, “The current reimbursement for those codes isn’t enough to justify the time needed
to have those difficult conversations.” She also mentioned that if she has a patient who is
interested in completing some advance care planning paperwork that she will “schedule [back to
back appointments] dedicated to advance care planning or allow myself to run late [spend extra
time with that patient] and try to overcome it throughout the day.” This approach is very similar
to the other provider who mentioned appointments used specifically and solely for advance care
planning. Many of the professionals that I interviewed from November 2017 through March of
2018 were aware of the reimbursement that Medicare started providing in January of 2016. One
of the providers I interviewed commented that, “Advance care planning can be time consuming,
to do it properly it takes at least 20 or 30 minutes and I don’t have that kind of time.” One of the
reasons advance care planning takes so long is that patients generally have questions and need to
spend time considering the options. Often times patients will want to discuss advance care plans
with a loved one who is not present. So the discussion has to be tabled and picked up again at a
later date either with that loved one present or with input from that particular loved one.
Providers want their patients’ wishes to be recorded properly and want to be sure their patients
understand and are comfortable with the decisions they make, so they do not want to rush their
patients through advance care planning or have their patients feel rushed, which is why many
providers do not bring up advance care planning. They do not have the time to properly discuss
such an important topic.
One of the key informants said,
“The thing I am seeing so much that really encourages me, is how many people, even
over just the last couple of years, have come around in the healthcare industry to
recognize the importance of these conversations. Just within maybe the last 3 or 4 years,
41
and I don’t know if it is because of the Medicare codes being approved, and people are
now understanding, Oh well if Medicare is now paying for it maybe it’s something that is
important.”
Chapter 6 will discuss Aim 3) How can those barriers be overcome and how can the usage of
advance directives be increased?
42
CHAPTER 5: DISCUSSION
I can remember a discussion with my parents about 15 years ago. They had recently met
with an attorney and done some financial and estate planning. My Dad handed me a 9 by 12 inch
envelope and told me it was a copy of their will, and that I needed to put it somewhere safe. My
parents then wanted to talk a little bit about the will and about their advance directives. As the
discussion got into some of the details regarding their wishes at end of life I can remember
clearly saying, “OK, OK, let’s stop talking about this. I don’t want to talk about this.” That was
well before I started pursuing a doctorate in public health or had much interest in advance
directives and end-of-life planning. My literature review and research both clearly indicate that
people do not like talking about death or dying, especially the death of a loved one or their own
mortality. My own experience, as mentioned above, confirms this as well. I found it interesting
that several of the key informants mentioned advance care planning being an uncomfortable
topic for healthcare providers to raise with patients. In one of the articles identified in my second
literature review, Felicia Cohn, Director of Bioethics for Kaiser Permanente, stated, “We need to
reframe the advance care planning discussion as a matter of choice and empowerment rather than
death and dying.” Reframing the advance care planning discussion will help with the most
important of the six themes from the key informant interviews, advance care planning being an
uncomfortable topic of discussion.
When you combine the lack of comfort that many healthcare providers have raising the
subject with the time constraints placed on providers and add the need to educate both the
general public and healthcare professionals, it is easy to see that there is work to be done in this
43
area. Medicare providing reimbursement to healthcare professionals for advance care planning
discussions is a step in the right direction.
As Table 1 showed, between the mid-1970s and mid-1990s all 50 states passed some
form of advance directive or living will legislation. Over the past 50 years the culture of
healthcare professionals in the U.S. has evolved from one that leans toward trying everything
possible to preserve life toward one accepting of death as inevitable and trying to maximize the
quality of life during the final days, weeks, or months of life. Palliative care as a board certified
specialty for physicians is less than 15 years old, becoming a defined medical specialty in 2006.
Palliative care is a specialty that focuses on the comforts and desires of the patient. End-of-life
care is one of the areas in which palliative care is most commonly used. As a patient and his or
her loved ones make decisions to limit life sustaining treatments, making sure the patient is
comfortable and not experiencing any unnecessary pain or distress is important for most patients
and families.
Educating patients and their loved ones on advance care planning and end-of-life
decisions can be complex and time consuming. In cases in which important end-of-life decisions
should be discussed and have not yet been discussed it is important to first be sure the patient and
loved ones understand the diagnosis and likely disease progression. This piece alone can be
difficult. As applicable once that piece is accomplished the treatment options available to the
patient should be covered along with the positive and negative aspects of each treatment option.
If a patient does not have an advance directive, after the patient and loved ones understand the
diagnosis and treatment options, advance directives and end-of-life planning should be
discussed.
44
A few key informants suggested that the simplification of some of the forms and different
types of advance care planning forms would help. They expressed frustration that there are so
many different types of advance directives, and several key informants shared that they prefer
using the MOST form. The MOST form is a medical order that is signed by both the patient and
clinician and becomes effective as soon as it is signed. MOST forms are not technically
considered advance directives because the MOST is effective immediately after it is signed and
advance directives are not effective until the patient is no longer able to make his or her own
decisions. MOST forms used in North Carolina clearly state that MOST is part of advance care
planning, which also may include a living will and healthcare power of attorney. While a DNR
form is only signed by a physician and only addresses cardiopulmonary resuscitation, a MOST
form addresses cardiopulmonary resuscitation, medical interventions, such as intubation or
mechanical ventilation, as well as the use of antibiotics and IV fluids. MOST forms and DNR
forms are different but both forms have the same goal of honoring a person’s wishes for the care
he or she receives at the end of life.
Interestingly, I did not hear anything about facilitators of getting an advance directive
completed. This was in spite of the fact that I asked the following questions:
How do you address the barriers to completing an advance directive?
If you could change one thing to make it easier to get an advance directive completed
what would you change and why?
Are you trying any new approaches or considering trying any new approaches to
getting an advance directive completed?
Is there anything that we haven't discussed that you would like to add?
45
The only answers I got that resembled facilitators were about education, simplification, and a
two-step approach involving two separate meetings to complete an advance directive. In
hindsight it would have been interesting to delve into potential facilitators a little more.
Exploring facilitators is something that could be explored in another research study that builds
upon this research.
46
CHAPTER 6: A PLAN FOR CHANGE
The previous five chapters addressed Aims 1 and 2, including: What are the barriers to
completing an advance directive? And what is the current environment for healthcare
professional reimbursement for counseling patients on end-of-life decisions and assistance
completing an advance directive? This chapter will address Aim 3: How can those barriers be
overcome and how can the usage of advance directives be increased?
I will be using Kotter’s (2012) eight step change model as a part of my plan for change.
The individual steps of Kotter’s change model are shown Figure 6.
Figure 6. Kotter’s (2012) Eight Step Change Model.
47
I work as a healthcare administrator in the UNC Healthcare System, where I am the
director of the UNC Rex Rehabilitation and Nursing Care Center in Raleigh, North Carolina. My
plan for change will start within the organization where I work. The UNC Healthcare system is a
not-for-profit organization that consists of ten hospitals, a physician network, and a senior
alliance/Accountable Care Organization (ACO). The ten hospitals include:
UNC Medical Center in Chapel Hill
UNC Rex Healthcare in Raleigh
Chatham Hospital in Chatham County
Johnston Health in Johnston County
Pardee Hospital in Henderson County
Caldwell Memorial Hospital in Caldwell County
Nash Healthcare in Nash County
Wayne UNC Healthcare in Wayne County
UNC Lenior Healthcare in Caldwell County
UNC Rockingham Healthcare in Rockingham County
The UNC Healthcare system has chosen to focus concerted efforts on completing advance
directives in the communities it serves.
Step One – Create a Sense of Urgency
CMS reimbursement for advance care planning discussions along with advance care
planning being an optional ACO quality metric have already started to create a sense of urgency
for healthcare providers across the country and UNC Healthcare is no exception. The UNC ACO
has chosen advance care planning as a quality metric. The following is an excerpt from a
48
national quality forum document describing how advance care planning will be calculated as a
performance metric.
“DESCRIPTION: Percentage of patients aged 65 years and older who have an advance
care plan or surrogate decision maker documented in the medical record or
documentation in the medical record or that an advance care plan was discussed but the
patient did not wish or was not able to name a surrogate decision maker or provide an
advance care plan
INSTRUCTIONS: This measure is to be submitted a minimum of once per performance
period for patients seen during the performance period. There is no diagnosis associated
with this measure. This measure may be submitted by eligible clinicians who perform the
quality actions described in the measure based on the services provided and the measure-
specific denominator coding.
DENOMINATOR: All patients aged 65 years and older in the identified population
NUMERATOR: All eligible encounters
NOTE: This measure is appropriate for use in all healthcare settings (e.g., inpatient,
nursing home, ambulatory) except the emergency department. For each of these settings,
there should be documentation in the medical record(s) that advance care planning was
discussed or documented.”
The process map for claims flow for this quality metric is shown in appendix E. (Appendix E)
49
Step Two – Form a Guiding Coalition
In early 2018 UNC Healthcare established an Advance Care Planning Task Force to
strategize and put a plan into action to increase the number of advance care planning discussions
taking place within the patient populations served by UNC Healthcare facilities. The task force
has twelve members from different entities within the healthcare system, including three
physicians, one attorney, one electronic medical record (EMR) expert and several administrators
on the task force. I am on the task force along with the person I report to, the Vice President of
Care Transitions, at UNC Rex Healthcare. The creation of the Advance Care Planning Task
Force is step two of Kotter’s eight step change model.
Step Three – Create a Vision
The vision of the task force is to increase the number of discussions about advance care
planning that take place between UNC Healthcare professionals and the patients we serve. The
strategy to achieve the vision has several components, including education and training for UNC
Healthcare physicians and healthcare professionals. The education and training will be tailored
for the entity/specialty where it takes place. The UNC Medical Center in Chapel Hill is planning
to focus training efforts in three outpatient areas: general internal medicine, primary care, and
medical oncology. UNC Rex is going to target inpatients through hospitalists and palliative care
physicians. UNC Rex will also target outpatients being treated by heart, vascular, and oncology
providers. The organization will also provide education and training to employees through a
table at the healthcare benefits fair and an online education module in the employee engagement
and well-being platform that offers discounts on health insurance for documenting healthy
lifestyle habits. The UNC Physicians Network will be providing training for all medical directors
50
and practice managers. Training modules for physicians and healthcare professionals will be
entitled:
Starting the advance care planning conversation
Documenting advance care planning discussions in the EMR
Billing the advance care planning discussion
An EMR advance care planning toolkit
Education and training for patients and families will occur primarily through face-to-face
interactions with healthcare professionals who have themselves received training on discussing
advance care planning with patients and families. An advance care planning education booklet
(Appendix C) was also created for patients and families. The advance care planning booklet
explains what advance directives are, why they are important, and describes several different
types of advance directives that are used in North Carolina. (Appendix D) The booklet also
provides some direction regarding where online advance care planning resources can be found.
Step Four – Communicate the Vision
I am writing this chapter of my dissertation in August of 2018 and at this time our
advance care planning task force has developed a plan for fiscal year 2019, which includes the
educational components covered in step three of Kotter’s eight step change model. UNC
Healthcare will be utilizing a two day training seminar provided by Vidant Health in Greenville,
North Carolina to provide education to approximately twenty advance care planning trainers in a
“train the trainer” model. The training is based on the Shared Decision Making in Serious Illness
(SDMSI) concepts. (Appendix F) Those twenty advance care planning trainers will then hold
their own training classes throughout the UNC Healthcare system. UNC Healthcare will also be
51
utilizing shared decision making in serious illness (SDMSI) training materials and education
provided by an organization named Respecting Choices, a leading organization in advance care
planning and education.
Step Five – Empower Others to Act on the Vision
The training that will be offered to healthcare providers is intended to empower them to
act on the vision and have more discussions with patients, families, and other healthcare
professionals about advance care planning. As an advance care planning task force member, I
will continue to share what I have learned from this research. Cohn’s assertion is that in order to
help patients and families feel more comfortable with advance care planning discussions we need
to reframe the discussions and make advance care planning about people being empowered and
having choices in the care they receive. Cohn’s idea has the potential to improve the status quo in
several of the barrier themes identified in this research. Reframing the discussion to one of
empowerment and choice will positively affect the fact that many people feel uncomfortable
talking about advance care planning because it is currently framed as a discussion about death
and dying. Dr. Cohn’s idea also plays directly into our American culture of not liking to lose.
Empowering a person with the ability to make decisions for themselves at a time when they are
no longer physically or mentally able to make decisions is a strong message and a great way to
look at advance care planning.
I will also encourage our task force to explore empowering a group of non-physician
healthcare professionals to take the lead in advance care planning discussions. One of the key
informants mentioned that some physician offices are experimenting with social workers, nurse
52
practitioners, and health counselors taking over discussions with patients about certain topics,
such as diet, exercise, smoking, and sleep habits. Non-physician healthcare professionals could
also lead discussions with patients and families about advance care planning. Having non-
physician healthcare professionals lead advance care planning discussions could positively
impact the time constraint theme identified in this research.
Step Six – Create Quick Wins
The goals of the UNC Healthcare Advance Care Planning Task Force for Fiscal Year
2019 are:
Provide advance care planning training for more than 65% of the physicians and qualified
healthcare providers in the targeted areas.
Track advance care planning metrics monthly in at least 6 outpatient practices.
Deliver advance care planning training to at least 200 UNC Healthcare clinicians in the
triangle region.
Deliver Respecting Choices SDMSI Training to at least 24 physicians and mid-level
practitioners in the triangle region.
Deliver one system-wide advance care planning educational opportunity.
Step Seven – Build on the Change
As we work through the first six steps of Kotter’s (2012) eight step change model we will
determine how to best build on the foundation for change we create. Being flexible and
understanding that we may have to adjust our approach and strategy will be important as we
work on increasing the number of advance care planning discussions that occur between UNC
Healthcare professionals and the patients and families we serve.
53
Step Eight – Institutionalize the Change
Similar to step seven, the work to be done to institutionalize the change lies ahead of us.
We will not be able to institutionalize the change until we have successfully worked through the
first seven steps of Kotter’s (2012) model. Steps seven and eight will be undertaken in fiscal year
2020 and beyond. Learning from the patients, families and healthcare professionals engaged
during the first six steps of the change model will help us shape steps seven and eight and set
ourselves up for success moving forward.
54
APPENDIX A: KEY INFORMANT INTERVIEW GUIDE
Key Informant Interview Guide: Welcome, Thank you for agreeing to participate in this
interview to discuss the barriers to completing advance directives. I am Greg Page, a student in the
UNC Doctor of Public Health Program. The information I collect during this interview is for my
dissertation research. I may publish portions of the dissertation, in which case the findings would
become publicly available. The interview will be completely confidential and any information you
provide will be released only as group summaries. Your name is not connected to your answers.
In order to fully capture your responses today, I would like to record our conversation. Tapes and
transcriptions will be destroyed at the end of the research study. Do I have your permission to
record our conversation today? [If yes]: If you would like me stop the recording at any point in our
conversation, please let me know and I will stop the recording. Thank you so much for agreeing
to talk to me and participate in this research study. The purpose of this interview is to learn more
about the barriers to completing advance directives. Approximately fifteen healthcare
professionals will participate in interviews like this one. The interview should take no more than
forty-five (45) minutes. I am happy to answer any questions you have about the research study or
the interview.
Thank you again for participating today, are you ready to get started?
55
APPENDIX B: KEY INFORMANT INTERVIEW QUESTIONS
Key Informant Interview Questions:
1. What is your professional title?
2. How long have you been in your profession?
3. Please describe how you use advance directives?
4. What are the most common barriers to getting an advance directive completed?
5. Why do those barriers exist?
6. How do you address those barriers?
7. If you could change one thing to make it easier to get an advance directive completed - what
would you change and why?
8. Are there any warning signs or signals that alert you that completing an advance directive is
going to be difficult?
9. Are you trying any new approaches or considering trying any new approaches to getting an
advance directive completed?
10. Are you aware that Medicare now reimburses healthcare professionals for facilitating end of
life discussions under CPT codes 99497 and 99498? And if so, do you think that will influence
more healthcare professionals to initiate end of life discussions?
11. Is there anything that we haven't discussed that you would like to add?
56
12. Is there anyone who you feel I should interview who could offer valuable insight on this
subject?
Conclusion Thank you for your time today. The information and insights you shared will be a
valuable part of my research. If you are interested, I would be happy to share the results of my
research when the final report has been approved and accepted by UNC.
57
APPENDIX C: ADVANCE CARE PLANNING BOOKLET – PATIENT AND FAMILY
EDUCATION
58
APPENDIX D: ADVANCE CARE PLANNING BOOKLET CONTENTS – PATIENT
AND FAMILY EDUCATION
59
APPENDIX E: PROCESS MAP ADVANCE CARE PLANNING CLAIMS FLOW – ACO
QUALITY METRIC
60
APPENDIX F: RESPECTING CHOICES SDMSI ADVANCE CARE PLANNING
EDUCATIONAL MATERIAL
Respecting Choices
Person Centered Care
Respecting Choices is proud to announce a new curriculum for physicians and other
providers. The “Shared Decision Making in Serious Illness” (SDMSI) curriculum is an ideal
complement to your current Respecting Choices ACP program. The SDMSI curriculum
improves physicians’/providers’ skills in providing person-centered care through a shared
decision-making process. It has been developed to perfectly align with any Respecting Choices
stage of planning you are implementing. The SDMSI curriculum is based on Respecting Choices
content and concepts to develop a uniform understanding and language for all health
professionals; Uses the Respecting Choices train-the-trainer model for ease of replication; Was
developed by the Respecting Choices content experts with a national group advisory team of
experts; Was beta tested at Spectrum Health, Dartmouth-Hitchcock, and Gundersen Health
System; Focuses on the central role of the physician/provider in helping patients make any
treatment decision that aligns with their goals and values; Provides tools and metrics to measure
individual and system outcomes; and Is cost effective. We are excited to initially offer this
curriculum to current Respecting Choices users who have Organizational Faculty.
*To get more information or a detailed proposal, please call or email Britt Welnetz at (608) 473-
3770 or [email protected]
61
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