ATTITUDES TOWARD ASSISTED DEATH
Attitudes in Santa Cruz County toward
Physician Assisted Suicide
Capstone Advisor: Dr. Juan José Gutiérrez
Department Advisor: Dr. Armando Arias
Nicole C. Perez
California State University, Monterey Bay
Division of Social & Behavioral Science
Sociology Concentration
December 17, 2015
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ATTITUDES TOWARD ASSISTED DEATH
Table of Contents
Abstract ………………………………………………………………………………….. 3
Introduction ……………………………………………………………………………… 4
Integration of Service Learning Outcome #2 .………………………………… 5
Literature Review ……………………………………………………………………….. 6
Integration of Service Learning Outcome #5 …………………………………. 8
Theory ...………………………………………………………………………………... 14
Integration of Service Learning Outcome #1 ………………………………... 14
Methodology …………………………………………………………………………… 17
Integration of Service Learning Outcome #3 ………………………………… 20
Results .…...…………………………………………………………………………….. 23
Conclusion ...…………………………………………………………………………… 27
References ……………………………………………………………………………… 28
Appendix ..……………………………………………………………………………… 34
Response to Service Learning Outcome #4 ………...……………………..….... 34
Survey ………..………………………………………………………………… 38
Quantitative Analysis - Chi Square Calculations ...…………………………….. 42
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ATTITUDES TOWARD ASSISTED DEATH
Abstract
This research project explores prevalent attitudes toward assisted death in Santa Cruz
County. It reviews the extensive literature on assisted death and compares the views in
the literature against perspectives from local residents in Santa Cruz County. At the onset
of this project, the research review and survey preparation were completed under the
assumption that the legalization of physician assisted suicide was hypothetical. In
November 2014 a 29-year-old woman Brittany Maynard became national news when she
announced her plan to use a lethal prescription obtained through Oregon’s Death with
Dignity Act, thus providing the momentum necessary for California to pass an End of
Life Option Act in October 2015. Although the End Of Life Options Act just recently
went into effect, results from the survey of Santa Cruz County residents were similar to
other findings with majority of the respondents supportive of a physician assisted suicide
law. The exploration of the existing attitudes reflected in this project represent positions
that demonstrate the complexity of the issue immediately before the End Of Life Options
Act was passed. Theoretical discussion of Talcott Parson’s ‘Sick Role’ theory to describe
the social expectations for sick patients helps explain the social expectations for patients
to get well and deny death.
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ATTITUDES TOWARD ASSISTED DEATH
“I will neither give a deadly drug to anybody if asked for it,
nor will I make a suggestion to that effect” – Hippocrates
Introduction
Physician assisted suicide and euthanasia may not be freely discussed terms,
however often times people recognize what they mean and immediately have an attitude
toward the topic, whether it is supportive or not. In the United States, many people
became familiar with the topic in the 1990’s through media attention surrounding Dr.
Jack Kevorkian and his assistance in ending patient’s lives. Dr. Kevorkian was a
Michigan medical pathologist who advocated and practiced assisted suicide. After
assisting in many patient deaths, the State of Michigan found Dr. Kevorkian guilty of
second degree murder when he allowed CBS’ 60 Minutes to air a videotape of him
administering a lethal medication to a patient (Pickert, 2009). In contract, in 1994, the
people of the state of Oregon voted in favor of the Death with Dignity Act (DWDA);
however legislative issues kept this law from implementation. In 1997, voters in Oregon
upheld their original vote and the “Oregon Death with Dignity Act” became the first law
of its kind in the United States (Oregon Health Authority, 2013). Since the passage of the
DWDA, 752 people have died from taking a prescribed lethal medication through the
DWDA. In 2013, 72 patients died from their DWDA prescription, which equals 21.9
DWDA deaths per 10,000 total deaths in Oregon (Oregon Health Authority, 2014). These
contrasting views and legal contexts provide the complexities of legalizing physician
assisted suicide.
This research project explores prevalent attitudes toward assisted death in Santa
Cruz County. It reviews the extensive literature on assisted death and compares the views
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ATTITUDES TOWARD ASSISTED DEATH
in the literature against perspectives from local residents in Santa Cruz County. At the
onset of this project, the research review and survey preparation were completed under
the assumption that the legalization of physician assisted suicide was hypothetical.
In a recent poll, 64% of California voters supported passing a death with dignity
measure (Simon &Whaley, 2014). California’s history in attempting to legalize a death
with dignity measure includes proposition 161, which was defeated by California voters
in 1992 by a 54-46 margin (Humphry, 2014, & Cohen et al., 1994), as well as Assembly
Bill 651 in 2006 that was unsuccessful in getting to an assembly vote (Patient’s Rights
Council, 2013). A recent push in California sparked a social movement for change and
the legalization of an assisted suicide law, motivating many to become involved and
come together for their community and state.
There is a civic and social responsibility for each individual in society. In the
simplest terms, the golden rule of treating others how you would like to be treated
extends to serving others and creating equality within our society. Healthcare related
social movements have focused on empowerment of patients becoming more involved in
their healthcare plans. These movements connect patients, families, healthcare providers
and non-profit groups with similar goals to promote the necessary changes for the
improvement and advancement of society.
Service is an essential component for communities and society, benefiting
individuals, groups, communities and the country. Adam Davis states that we must be
thoughtful in our service (as it may not always be considered good), and understand
inequality in relation to service (Davis, 2006). Inequality in healthcare choices has
promoted the movement for death with dignity laws through the United States. “Those
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who serve set out to help, yes, but they also set out to bridge a gap, to remedy the
consequences of inequality…” (Davis, 2006, p. 153). Brittany Maynard and Compassion
and Choices have attempted to close the gap in California through the movement of an
End Of Life Options Act.
Since Maynard joined as an advocate for Compassion and Choices, became
national news and momentum for California’s End of Life Options act grew. Maynard
had written a letter discussing her diagnosis, her wish to not die but her understanding in
that there was no cure for her cancer, and then her motivation to help others by
advocating for a law in California. According to Rachel Remen, there are differences
between helping, fixing and serving,
…when we serve, we don’t serve with our strength; we serve with ourselves, and
we draw from all of our experiences. Our limitations serve; our wounds serve;
even our darkness can serve. My pain is the source of my compassion; my
woundedness is the key to my empathy (Remen, 1999, p. 1).
Maynard had met with California governor Edmund G. Brown a few days before her
death to discuss a death with dignity act in California as stated by her husband Dan Diaz,
“…so that others would not have to go through what she went through” (McGreevy,
2015). On October 5th, 2015 governor Brown signed into law Assembly Bill 15 End Of
Life Option Act for California, allowing mentally competent, terminally ill adult patients
the ability to access a lethal prescription to end their own lives. In a letter from the
governor he states that he had extensive discussions regarding the topic, ultimately
stating he could not deny the right to others (Brown, 2015). Maynard’s personal service
to the issue motivated her family, an organization and a state to move forward and
successfully accomplish what many others have attempted in the past. The exploration of
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ATTITUDES TOWARD ASSISTED DEATH
the existing attitudes reflected in this project represent positions that demonstrate the
complexity of the issue immediately before the End Of Life Options Act was passed.
Theoretical discussion of Talcott Parson’s ‘Sick Role’ theory to describe the social
expectations for sick patients helps explain the social expectations for patients to get well
and deny death.
Literature Review
Physician assisted suicide is an important topic as almost everyone knows or will
know someone with a terminal illness, and everyone will die. With healthcare and
technology advances, many patients’ lives have been prolonged with illnesses that in the
past would have caused death. The current healthcare field and society ignore the topic of
death and have attempted to advance healthcare to the point of sustaining life for as long
as possible, even if it means there is a decrease in the quality of life.
The term ‘physician assisted suicide’ presents with multiple definitions, therefore
within this research project, this terms will have the following definition: Physician
Assisted Suicide is the act of a physician prescribing a lethal medication to a patient with
the intent of the patient using it to end their life.
The literature review discusses key points of physician assisted suicide including
medical and technology advances that have allowed for extended life (and death), patient
autonomy and choice, religious affiliation and the correlation it has on the position one
holds to the topic, safeguards, the “Double Effect”, and previous death experiences and
the correlation to the attitude one may have toward death (and therefore assisted suicide).
With advances in health care and technology, life spans have increased with better
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treatment, early diagnosis, advanced medication administration and increased knowledge
for all things life saving. However, death in America is not normally an openly discussed
topic and there is a growing sense of fear that the end of life may become a prolonged
and painful decline where one has no control over their fate. In fact, one of the greatest
issues with end of life care for those in favor of the legalization of assisted suicide is the
lack of autonomy at this stage of life. Those opposed to the legalization of physician
assisted suicide indicate ethical, moral and religious values that influence their position
toward death to occur without intervention.
With the advancement of technology, death has become difficult to achieve.
Current medical technology has improved to the point of maintaining the basic functions
of life, such as brain activity and heart function, however that advancement of technology
has also allowed terminally ill people to suffer until their eventual death (Kay, 2006).
Fraser and Walters discuss dying in today’s society has become difficult due to the
advancement of medical knowledge and technology allowing those who are terminally ill
to linger in death, where as in the past people with similar diseases would have died more
quickly (2000).
Volandes and John Paris share similar sentiments toward technology and
healthcare, both stating that we have come to believe that modern medicine and
healthcare can defeat death and that modern miracles are the norm (Paris, 2009 and
Volandes, 2015). John Dombrink states that the advancement of healthcare and
technology came with the goal to cure while Volandes states that technology has made
possible the breakthroughs in healthcare that doctors had only read about in school,
however “modern medicine is founded on the conviction that technology will conquer all,
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including death” (Dombrink, 2007 and Volandes, 2015, p. 26). The advancement of
technology in healthcare has been an essential part to life saving treatment, the focus,
however, is on quantity and not quality.
Increased social media has brought ‘end of life autonomy’ back to the nation’s
healthcare conversation. Brittany Maynard utilized technology and social media to bring
to light the issue of end of life autonomy. Maynard’s first video shared through her
website (The Brittany Fund) and Compassion and Choices, had 9 million views within
the first month of posting (The Brittany Fund, 2015). Social media allowed Maynard’s
voice and story to be heard all over the world, prompting many states to introduce death
with dignity legislation. Maynard’s main goal was to start the conversation and motivate
lawmakers to allow death with dignity (autonomy at the end of life) for Americans.
Maynard’s ability to access Oregon’s DWDA allowed her the opportunity to die amongst
family and friends, in her home and on her own terms.
With the increase in healthcare technology, hospitals became the place that people
died rather than home. More than 80% of Americans would prefer to die at home than in
a hospital (Volandes, 2015). As stated by Salem,
The advances of modern medicine in association with its overwhelming bias to treat
have engendered widespread and increasing fear. More than death itself, what
seems frightening is the very real prospect of losing control over one’s own dying
process (1999, p. 30).
The fear of technology preventing death has created a demand by patients to maintain
autonomy at the end of life (Dombrink, 2007).
Although many would prefer the option to decide their own treatment at the end of
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life, religious beliefs can often determine whether someone is supportive of a death with
dignity law. Dickinson, Clark, Winslow and Marples compiled results from their
systematic review of U.S. research studies on physicians’ attitudes toward assisted death.
Dickinson et al. state seven studies correlated attitude and religion, finding that the more
religious the physician, the more they are opposed to assisted suicide (2005). Physicians
who were Catholic were more opposed than physicians of other religions (Dickinson,
2005). Curlin, Nwodim, Vance, Chin and Lantos’ 2008 study also shows those opposed
to physician assisted suicide were partially opposed due to religious affiliation, while C.
Seale’s study showed that religious affiliation is a common component found in
physicians and the general public with opposition toward physician assisted suicide
(2009). Burdette, Hill & Moulton also find that religious people have conservative
attitudes toward physician assisted suicide compared to those who are not religious
(2005). Malpas, Wilson, Rae, and Johnson’s 2014 study of older people opposed to
physician assisted suicide demonstrated many participants acknowledged that their
religious beliefs influenced their thinking in many life situations, as well as with
physician assisted suicide. Judge Stephen Reinhardt states, “Those who believe strongly
that death must come without physician assistance are free to follow that creed. They are
not free, however, to force their views, their religious convictions, or their philosophies
on all the other members of a democratic society, and to compel those whose values
differ from their own to die painful, protracted, and agonizing deaths” (Lowe, 1997, p.
49). In addition to religion, for many physicians, the ethical and moral aspect of assisted
suicide influences their attitude greatly.
The American Medical Association and the American Geriatrics Society state
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treatment options that can prolong life are ethically and morally approved if patients
request them to be withheld, however physicians should not cause death (Dickinson, et
al., 2005, p. 44). “…Terminally ill patients on life support have a legal right to refuse all
treatment (and thus effectively end their lives), terminally ill patients who are not on life
support lack this right” (Raus, Sterckx and Mortier, 2011, p. 33). The Supreme Court has
ruled that there is no constitutional right to suicide, however the court has left the
decision to legalize assisted suicide to each individual state (Hosseini, 2012 and Kay,
2006). This becomes difficult for physicians as their expectation as a healthcare provider
is to help patients and do no harm, including purposely end a patient’s life. As Lowe
states in her article, if a patient refuses treatment that may save their life, they will die
from the underlying disease, however if they ingest a lethal medication, they will die
from that medication (Lowe, 1997). The differences between “letting a patient die and
making a patient die contain vital, logical principles; causation and intent are well
established legal concepts” (Rose, 2007, p. 143). Therefore, allowing a patient to
succumb to the medical condition without feeding tubes or with pain relievers is ethical,
yet prescribing a medication that will cause death is not.
Much like medical associations, church and religious doctrines are more apt to
support palliative measures and the “double effect” as opposed to assisted suicide. As
Seale explains, the double effect is giving a patient enough of a drug to resolve their pain
knowing that one side effect of the drug can result in depressed breathing and therefore
end the patient’s life (2009, p. 211). In June 2015, the California Medical Association
(CMA) changed their position on physician assisted suicide from opposed to neutral,
stating “CMA’s focus has historically been on improving end of life options and
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enhancing palliative care and hospice for patients who are terminally ill, ultimately
however, its up to the patient and their physician to choose the course of treatment best
suited for the situation- and CMA’s new position on physician aid in dying allows for
that” (CMA, 2015). Although the CMA has changed their position to neutral in order to
allow the patient and physician the ability to discuss the option, some physicians may still
not be willing to participate in assisted suicide. A survey comment in Seale’s data stated a
physician would be willing to give a patient a narcotic to relieve pain (treating a
symptom) even though it may lead to their death as it is more acceptable than assisting a
patient’s suicide (2009). Dickinson et al.’s data provide similar sentiments; physicians
may be supportive of assisted suicide but are less interested in participating (2005).
The mere fact that a medical procedure is legal does not mean that all physicians
must participate. According to Boudreau and Somerville’s article, although Oregon
passed the “Death with Dignity Act” (DWDA) in 1997, many patients must search for a
physician that is participating in order to obtain the lethal prescription. This results in a
short patient-physician relationship, an average of 12 weeks (2013). Physicians who are
involved in geriatric care, oncology and have patients with terminal illness tend to be
more opposed of assisted suicide (Seale, 2009). Patients who fall within these categories
tend to be the patients who would request assisted suicide. This can create a difficult
situation for terminally ill patients where the opposed physician would likely deny the
request for assisted suicide by the patient. The importance of physicians supporting
physician assisted suicide have proven to be helpful in allowing places such as Oregon,
Belgium and the Netherlands to pass legislation (Seale, 2009).
Safeguards for the physician and patient are in place for those wishing to participate
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in DWDA. Oregon safeguards include an assessment of the mental state of the patient,
the request must be made several times on separate days, and an independent physician
must also evaluate the patient (Raus, Sterckx, and Mortier, 2011). These safeguards are
also important in determining that the patient is acting voluntarily and help prevent the
fear that physician assisted suicide could lead to the patient being persuaded by friends
and family members to end their life (Lowe, 1997). Salem argues that the safeguard of
determining mental capacity for assisted suicide is the opposite of normal societal rules.
With this, the power is actually on the side of the physician and healthcare system rather
than promoting patient autonomy (Salem, 1999).
Past experiences with death and dying also influences the attitude toward
physician-assisted suicide. Depending on the person and the type of experience, it can
sway the attitude one way or the other. Attitudes toward physician assisted suicide
become more positive with age. Experience with death and dying may influence positive
attitudes toward assisted suicide, as the elderly seem to accept death more easily than
their younger counterparts (Fraser & Walters, 2000, and Mims, 1998). With a good death
experience, participants feel that quickening death is unnecessary and results in a loss of
the precious final days, “it sounds terrible but there is some great beauty in those last
days of life…There is something about that time which is just as important as rejoicing in
the birth of a baby” (Malpas, et al., 2014, p. 355). Past experiences with death influence
future experiences, including one’s own death process. Kay’s article describes that
terminally ill patients supported assisted suicide as an idea, however when considered as
an actual option for their situation, only 10 percent of the study considered it, and those
who did consider it changed their mind a short time later (Kay, 2006). As stated by
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Salem, Western society considers taking one’s life into their own hands as an act against
social norms. This creates an issue with assisted suicide due to the fact that it is assisted,
therefore requiring assistance from another. Utilizing a physician can remove the stigma
that society has created around suicide (Salem, 1999).
The CBS 60 Minute Dr. Kevorkian program brought the issue of end of life choice
dramatically into the nation’s living rooms. The scene of dying gracefully and peacefully
illuminated a topic that many avoid as well as providing the dignity behind assisted
suicide (Hosseini, 2012, p. 205). Positive attitudes toward death develop over time, which
allow for end of life situations to be critically evaluated and discussed with family
members or physicians (Nyatanga, 2013).
Death should not be an unspoken and ignored topic. Society has come to believe
that advanced technology and medical advances can extend life and prevent death,
however this is not the case (Paris, 2009). Death will come to everyone, for most it will
be natural and peaceful, however to patients with a terminal illness it may not. Should we
allow those patients to suffer until their inevitable end?
Theory
There is privilege associated with being healthy. Although we do not correlate
being healthy with privilege, once one’s health suffers or fades, the connection becomes
very clear. In the United States, society holds specific roles that everyone falls into,
which include the role of living as a healthy citizen. As Matthias Varul states, since the
1970’s health has become more of a preventative role, in fact a “moral responsibility” to
avoid becoming sick (2010, p.87). Health is a social expectation and is a privilege to
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those who have it.
As Alan Johnson discusses in his book, Privilege, Power and Difference, those
who have privilege may not even be aware that what they have qualifies as privilege. It is
the group that does not possess privilege who bring it to their attention and seek equality.
Peggy McIntosh asserts that “privilege exists when one group has something of value that
is denied to others simply because of the groups they belong to, rather than because of
anything they’ve done or failed to do” (Johnson, 2005, p. 21). When people hear the
word privilege they may think of race and power, however any characteristic that does
not fall within the dominant group is at a disadvantage. As described by Johnson, the
normative role for the dominant group includes (but is not limited to) being a non-
disabled person. Although the definition of disabled can include many conditions, it is
really defining anyone who is not a healthy, “normal” person in society. Johnson reminds
us that “the paradoxical experience of being privileged without feeling privileged is a
second consequence of the fact that privilege is more about social categories than who
people are. It has to do primarily with the people we use as standards of comparison…”
(2005, p. 35-36). With a terminal illness, people move from the normative social role of
non-disabled, healthy person to a disabled, sick person and thus into a new social role, the
‘sick role’.
As discussed by Talcott Parsons in his social system theory and the role of health
institutions, the sick role defines any person who is in a state that requires the person to
be relieved of their normal social roles in order to seek help and treat their sickness.
Parsons argues that becoming sick affects the social equilibrium, therefore becoming a
social issue. The sick role is assumed by the patient and described as deviance from the
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social norms. Initially the sick role is used to define the temporary role of a sick person.
The expectations for the sick person follow four themes:
1. The person dismisses themselves from their normal social obligations (i.e.,
work).
2. The ‘condition’ of the sick person must be changed and therefore they are in a
state of ‘needing to be taken care of’.
3. There is an obligation of the sick person to want to get better from their
undesirable state.
4. There is an obligation of the sick person to seek help from a technically
competent physician and to follow their recommendations.
The overall social understanding of the sick person is that they cannot control their
illness, however they are expected to get better (Parsons, 1951). The resulting social
expectations of the sick person have created impossible expectations for a terminally ill
patient to obtain; therefore they are competing with the expectations of society
(Kassebaum & Baumann, 1965).
A sick person is of course, not responsible for their condition, however they are
expected to make and take all necessary actions to get well. This sick state is considered
temporary; therefore society has a willingness to accept the temporary condition of the
sick person. The willingness to accept this person as sick comes with the person’s
economically productive contributions to society (Klein, 2011). Acceptance of this role
determines the sick person is relieved of all social duties and responsibility while they are
sick (Segall, 1976).
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Parsons based his theory on the fact that physicians are trained and technically
competent, much like any other person in a professional position. Physicians are then
expected to hold skills and knowledge that someone without the proper schooling and
training would not have. This creates expectations of the physician to fulfill the role of
competent help. Under this condition, the patient is expected to follow physician’s
recommendations and treatment plan in order to get well (Segall, 1976). Segal,
Kasselbaum and Baumann all state that the traditional sick role is not accurate for the
chronically or terminally ill patients. They state that the traditional sick role is for a
temporary illness and therefore the social expectations are not the same as they would be
for a chronic or terminal illness. The sick role is argued to have faded out of use in
medical sociology as the move from treating sickness to prevention and promoting health
began, thus forcing the sick role from its relevance. The departure from the sick role
created the role of the healthy patient, or ‘health role’, which meant “there was a moral
obligation ‘to behave, think and feel “healthily’” (Burnham, 2014, 79).
The sick role was initially meant to define all patients who fell into the category
as sick, however many argue this does not well represent the terminal and chronically ill
patients. The application of this theory to a terminal or chronic illness is in fact more
appropriate for the explanation of societal expectations for a patient. The role of a sick
patient versus that of a chronic or terminal patient is one and the same according to
societal expectations for treatment and then their re-entrance into society.
Methodology
This research project, while limited in its scope and reach, follows the scientific
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method, which is defined by systematic data collection with the ability to research, test
and reach results congruent to previous similar studies. “Scientific method refers to a
standardized set of techniques for building scientific knowledge, such as how to make
valid observations, how to interpret results, and how to generalize those results. The
scientific method allows researchers to independently and impartially test preexisting
theories and prior findings, and subject them to open debate, modifications, or
enhancements” (Bhattacherjee, 2012, p. 5).
The survey was designed to test attitudes of residents in Santa Cruz County toward
the topic of physician assisted death. The type of data used within this research project is
both qualitative and quantitative data. The use of both quantitative and qualitative
methods (mixed methods) validates the research by supporting both types of data
collection and analysis.
As part of the preparation for research, a ‘Human Subjects’ application was
submitted to CSUMB’s Human Subjects Review Board due to the sensitive nature of the
topic. The application was approved by the Committee for Protection of Human Subjects
as the project presented was not collecting enough personal identifiable information from
each respondent that could be traced to the individual should the results become public
and available.
An anonymous survey was created to collect the data for this research project.
Reaves explains a survey as a set of questions designed for the purpose of administering
to a select group of people whose answers are collected and evaluated as a representative
sample of the entire population (1992). Survey questions were created based on previous
surveys and questionnaires administered by authors of articles reviewed during the
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archival data analysis of this project (Seale, 2009 and Kouwenhoven, et al. 2012). The
survey created includes Likert-type (fixed) and open-ended questions to provide both
quantitative and qualitative data.
Fixed response questions are included as the majority of the questions in the survey
as they provide a set of options as answer options (Likert-type scale questions). Open-
ended questions are included in the survey to allow the respondent the ability to convey
their attitude more clearly. Reaves cautions that open ended questions may be difficult to
analyze and the answers may not be representative of the population (Reaves, 1992). This
survey limited the amount of personal identifiable information being obtained from
respondents, therefore eliminating the possibility of follow up and clarification of
responses given during the survey. The lack of clarification of personal statements can
prove troublesome to research data as it may be deemed unreliable and non-
representative. One respondent’s answers were omitted from the final results due to
inappropriate comments left in the open-ended questions and ‘additional comments’
section. Although many respondents shared candid comments in their open-ended
responses, this particular respondent’s answers were removed to keep the integrity and
reliability of the data intact. Although removing all of the answers could prompt ethical
research guidelines to be questioned, the other survey questions could not be considered
truthful or honest; therefore they were discarded from the project. Although the group of
participants was meant to yield a diverse and representative sample, anonymous data
collection comes with the risk of not being able to follow up and clarify answers from
respondents.
Two pilot surveys were conducted and questions were reworded in an attempt to
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clarify the responses in addition to removing the neutral option from most of the Likert-
type scale questions. Pilot survey responses demonstrated the neutral option was not
beneficial to reliable research as many respondents relied on the neutral option when
answering the ‘uncomfortable’ questions. In addition, pilot surveys demonstrated a need
to define the answers for the question asking how religious the respondent was (example:
Very Religious – religious practices or acts 4+ times a month, Somewhat religious as 3 or
less religious practices/acts a month). The question regarding safeguards was re-phrased,
as it previously asked, ‘what type of safe guards should exist’, which is a loaded question
that leads the respondent by implying that safeguards must exist. With pilot surveys
completed, questions were checked for reliability and validity (see Appendix for final
survey). Final survey data was calculated and questions with four Likert-type categories
of answers (Strongly Agree, Agree, Disagree, Strongly Disagree) were combined into
two categories (Agree, Disagree) for ease of presentation and discussion.
The respondents for the final survey were self selected (convenience group) and
given the option to take the survey through the survey link posted on Facebook, and via
email (CSUMB emails to SBS majors requesting participation from Santa Cruz County
residents only). “Sometimes a convenience sample is chosen by the participants rather
than the experimenters. A sample is self-selected when the people in the sample are
simply those who volunteered to take part. Such a sample is certainly convenient, but it is
hardly representative. It is quite likely there is a systematic difference between those who
chose to be in the study and those who did not” (Reaves, 1992, p. 96).
Due to the time constraints of the project, the sample size does not reflect a proper
representative sample of the Santa Cruz County population.
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A sample is representative when it is similar in all measured respects to the
population it is being used to represent, and therefore it is safe to generalize from
that sample to that population. Representativeness is the relationship between a
sample and a population, therefore a sample may be representative of one
population without being representative of another population (Reaves, 1992, p.
95).
As stated by Tashaskkori and Teddlie, even if the population is small, a certain portion of
that population is actually accessible to a researcher and therefore it is difficult to obtain a
representative and reliable sample (1998).
The history of the Catholic religion and more recent history of the liberal
influences from UCSC have created a dynamic mixture of residents with various
religious beliefs and healthcare perspectives. Santa Cruz is a unique mixture of people
and cultures. In the 16th century Native American tribes covered the central coast of
California (now known as Ohlones) (Cartier, 1991). In 1791, Franciscan priests founded
the mission, “Holy Cross” in the center of Santa Cruz, and in 1797 the Spanish Viceroy
established the Villa de Branciforte (Dunn, 1989). Santa Cruz was established by the
Catholic Church and supported by neighboring Carmel and Santa Clara Missions (Holy
Cross Santa Cruz, n.d.). The Catholic Mission influenced the community greatly,
including the request for Catholic based healthcare services, prompting the take over of
local hospitals to become under the control of Dominican Adrian Sisters. With the Adrian
Sister’s mission and vision for healthcare, many patients and healthcare providers were
required to follow Catholic beliefs within their healthcare treatment (Dignity Health
Dominican Hospital, 2015). Dominican Hospital has always been a Catholic based
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healthcare facility, however it is now currently part of Dignity Health, one the of the fifth
largest health systems that includes 22 Catholic based facilities (Dignity Health
Dominican Hospital, 2015). The Mission and Catholic hospitals were built and founded
in Santa Cruz with the intention of service to the community. Although there is a large
influence of Catholic faith within Santa Cruz County, there is also a liberal aspect that
many attribute to the addition of the University of California, Santa Cruz (UCSC).
In 1906, Santa Cruz had became a tourist destination, however when tourism
slowed, city officials needed to figure out a way in to increase development. The
University of California system was looking to add a new campus near the San Jose area.
Santa Cruz officials fought San Jose and won the bid to build a new UC campus. In
1965, Santa Cruz opened the university anticipating industry development along with
new students. UCSC was developed to include liberal art, science and humanity degrees
that encouraged a liberal demographic to move to Santa Cruz to attend UCSC (Domhoff,
2009). “From the late 1960s until recently, Santa Cruz, California was the most
politically progressive medium-sized or large city in the United States. An unlikely
confederation of socialist-feminists, social-welfare liberals, neighborhood activists, and
environmentalists stopped every major development project they didn't like after 1969,
and controlled the city council from 1981 through the beginning of the 21st century”
(Domhoff, 2009). Due to the inclusion of a very liberal demographic, the combination of
a very religious healthcare system and UCSC, Santa Cruz County includes a vast array of
people and perspectives.
Dignity Health Dominican Hospital and UCSC are both integral institutions in the
history of Santa Cruz County. Each provides a service to the community that is necessary
22
ATTITUDES TOWARD ASSISTED DEATH
to allow for development and health within the community. As Johnson states, we are all
part of social systems, therefore we have a responsibility to help those who are not
privileged, and in this case, privileged with health and education (Johnson, A., 2015).
The population based on the US Census 2010 data for Santa Cruz County is
262,382. According to the Bureau of Labor Statistics, the number of health care providers
for Santa Cruz and Watsonville from May 2013 was 6,980 (most recent data). According
to the California Cancer Registry, there was an estimation of 1,175 new cancer cases for
Santa Cruz County in 2013 (California Cancer Registry, 2013). Based on the percentage
of healthcare workers available for the Santa Cruz/Watsonville area, with a confidence
level of 95% and a confidence interval of 1, the sample size for Santa Cruz healthcare
provider respondents (not including the general population) would be 4,042. Even if this
research project were focusing only on healthcare providers, a sample size of 4,042
respondents is impossible to obtain with the time, resources and financial constraints
(Creative Research Systems Survey Size Calculator). The unique environment of Santa
Cruz County provides an interesting sample population for this research project.
Results
The results for this study were consistent with studies discussed in the literature
review as well as those recently accomplished by Gallop and Goodwin Simon Strategic
Research. Gallop concluded that Americans were supportive of assisted suicide (seven in
10) and Goodwin Simon Strategic Research concluded 64% of Californians would vote
in support of an assisted death bill (McCarthy, J., 2014 & Goodwin Simon Strategic
Research, 2014).
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ATTITUDES TOWARD ASSISTED DEATH
Overall, the research presents a positive response and pro-positioning of
respondents toward a physician assisted suicide law. The final sample total (N) was 122
anonymous respondents. An overwhelming 92% of respondents agreed that their attitude
toward the legalization of physician assisted suicide was positive. When respondents
were asked later in the survey if they had the ability to vote on a law tomorrow to legalize
assisted suicide, only 89% said they would vote yes.
In accordance with the theoretical discussion, 64% of respondents stated they
agreed that patients / people whom are sick must make every attempt to get well.
Religious affiliation has a significant influence on the attitude toward assisted
suicide. 14% stated they were “Very Religious” (practice/devotion once or more a week),
25% stated they were “Somewhat Religious” (practice/devotion 1-3 times a month), 61%
answering “Not Religious” (not religious may also include respondents who are not
currently practicing their religion but may still consider themselves religious, therefore
this category requires more research). A Chi square analysis calculation shows a strong
correlation between religious affiliation and attitude toward assisted suicide. Of the 17
respondents who stated they were very religious, 10 of those respondents also stated their
attitude toward assisted suicide was positive. 100 of the respondents stated they did not
believe their religious affiliation influenced their attitude toward assisted suicide while
the remaining 22 people stated they agreed that it did. Although these data show a strong
correlation between the religious affiliation and attitude toward assisted suicide, it does
not delve into the specifics of how and to what extent religious affiliation influences
attitude. This evaluation does not analyze each individual’s position on assisted suicide
and the specific religious affiliations they associate with. More time and research are
24
ATTITUDES TOWARD ASSISTED DEATH
required to accomplish this evaluation appropriately.
Only 15 respondents stated they were a healthcare provider. Chi square analysis of
healthcare providers and attitude toward assisted suicide being unethical shows these
variables are independent, however a larger healthcare provider sample may have
provided more conclusive results as shown in previous studies.
Additional Chi square analysis was completed to evaluate multiple variables
dependencies, however without the ability to follow up with respondents regarding their
answers, these calculations are not necessarily reliable. Some calculations showed a
‘strong’ dependency between religious affiliation and if religious affiliation influenced
attitude toward assisted suicide. Due to the majority of respondents that chose “Not
Religious”, this calculation is not reliable as many of those respondents may be religious
to some extent, but considering the definitions given in the survey, their best option may
have been to choose ‘Not Religious’. Therefore, religious affiliation must be evaluated
separately and would benefit more from a qualitative analysis through interviewing
methods. Interviewing methods for research data gathering requires extended time and
resources that were unavailable during this research project (see appendix III for
additional quantitative analysis).
The qualitative analysis was helpful in understanding respondent’s positions and
attitudes more clearly than what the Likert-type questions allowed. Majority of
respondents agreed that safeguards for an assisted suicide law should include;
independent physician evaluations, a previously established relationship with the
physician, the patients verbal and written requests (more than once) with a waiting period
between request and action, mental health evaluations, and even the possibility of a panel
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ATTITUDES TOWARD ASSISTED DEATH
reviewing the case prior to any administration of the lethal medication.
The two questions, “If you were diagnosed with a terminal illness, would you
request assisted death or euthanasia?” and “What is the largest contributor to your
attitude toward the legalization of assisted death in California?” proved to be extremely
beneficial in understanding multiple views toward physician assisted suicide. Although
there were many respondents that stated they would not request assisted death if
terminally ill, statements expressing the ability for others to choose overwhelmed the
responses that were strictly opposed.
“Its hard to say. I probably wouldn’t, but I don’t see why people cant if they want
to”
“I have no idea what I would do in the situation but I believe the option should be
available to those who meet the criteria as a viable end result to their experience”
“No because I would want to fight it to the end. I say that now because I’m not
terminally sick. If that ever happens though it would be nice to have the option just incase
the pain is too unbearable”.
The question “If you were diagnosed with a terminal illness, would you request
assisted death or euthanasia?” gave the respondent minimal variables. A vignette was not
included for this question to leave the variables similar to those included in the End Of
Life Options Act in the senate at the time of the survey. Those that could not decide
stated they would require more information such as their treatment options, the diagnosis
and prognosis of their disease. Some respondents also stated that they could not
appropriately answer the question as they were not currently terminally ill and in the
correct mindset to make such decisions.
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ATTITUDES TOWARD ASSISTED DEATH
Responses to the question “What is the largest contributor to your attitude toward
the legalization of assisted death in California” resulted in many respondents noting
previous experiences with friends and loved ones suffering through terminal illness.
Common phrases used included “the right” to end their lives and have a choice,
“quality/value of life”, and “religious beliefs/God”. Some statements referenced short
lifespans and the need to take advantage of every day we are given.
“There is meaning and potential in life. There is no meaning or potential in death”,
“no one should let a disease overcome them so much that they want to end their life.
Terminal disease is difficult but that doesn’t mean end all just because you are given an
approximate amount of time to live. Enjoy every moment of it”.
Summary of findings
92% of respondent’s attitudes were supportive toward the legalization of physician
assisted suicide.
64% of respondents state patients/people who are sick should do everything to get
better.
The variables of ‘healthcare provider status’ and respondent’s attitudes toward
physician assisted suicide’ require a larger sample size to determine correlation.
Qualitative analysis shows respondents believe physician assisted suicide is a
Patient /Human Right.
The variables ‘Religious Affiliation’ and respondents attitudes toward physician
assisted suicide are connected.
27
ATTITUDES TOWARD ASSISTED DEATH
Conclusion
This research project set out to explore the prevalent attitudes toward assisted death
in Santa Cruz County. This research project has shown that although there are hurdles in
allowing autonomy within a patients end of life plan, the majority of people support the
right to have the option to end life with the help from a prescribed medication.
At the time this research was initiated (Spring 2014), legalization of physician
assisted suicide was represented by a very small social movement with little to no media
attention in California. That quickly changed when Brittany Maynard had millions of
people discussing end of life issues, and specifically reignited California’s end of life
movement. This research project was started with the hope that obtaining the attitudes of
a particular California community toward the legalization of assisted suicide could fill the
gap of research specific to California, which is necessary to begin legislative momentum.
At that time, research sources, polling data and documentation on assisted suicide
specific to California was minimal. Currently, there is too much data that it cannot be
commented on nor included in this research project.
Medical advancements have been extremely beneficial for curing and treating
disease and illness, as well as prolonging life. The moral and ethical components to this
topic will never be resolved completely. Moral and ethical beliefs of physicians and those
with religious affiliations will not be changed. Although California now has a law in
place, extensive research and data collection will need to be done to demonstrate the
extent of the success, safety and willingness for terminally ill patients to access this
option. With the implementation in California, many patients will now have the option,
which maintains their autonomy and provides a safe, controlled end of life choice.
28
ATTITUDES TOWARD ASSISTED DEATH
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Appendices
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Appendix I
Service Learning Deliverable response to question 4 – Reciprocity
CSUMB’s philosophy on service learning encourages students to cultivate
reciprocal partnerships within their community (CSUMB- Service Learning). Carole
Pound states “…active and equal engagement in life (rather than services) calls not just
for individual change but social change, a shift in thinking from attitudes and
relationships that perpetuate patient-hood to those that promote citizenship” (2001, p.
197). Society is built upon forms of exchange,
social exchange involves the trading of any resource… Reciprocity is therefore
central to many areas of social life, and is crucial for maintaining social order by
enabling cooperative exchanges…(Keysar, B., Converse, A., Wang. J., and Eply,
N., 2008, p. 1280).
Throughout our lives we are in continuous social exchanges with people and
communities, therefore we must make reciprocal relationships essential to environment,
community and society.
Heartland Hospice provides hospice services to Monterey and Santa Cruz County
patients diagnosed with terminal or chronic illnesses. Reciprocal exchanges occur
everyday within Hospice from business office employees, registered nurses caring for
patients, as well as spiritual counseling and grief counseling services to families. These
reciprocal relationships can be simply coworkers working together within an office, a
registered nurse providing care and medications to a patient in pain, or a volunteer
spending time with a patient as a friendly visitor.
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Heartland volunteers provide respectful, friendly visits to patients and families
during the end of life stages of patients in hospice care. Patients not only seek friendly
companionship and conversation, but they also provide the opportunity for volunteers to
participate in a reciprocal relationship (Heartland Hospice, Volunteer). As a volunteer,
there is an equal and mutual relationship created with the patient and the reciprocal
relationship is then “…uncluttered by the hierarchal power relationships…” (Pound,
2011, p. 197). As stated by Pound, many chronically ill patients can experience difficulty
with self-efficacy after being on the receiving end of support (2011, p. 199). As a
volunteer, the relationship provided is a peer-to-peer relationship versus the healthcare
professional and patient relationship the patient experiences more often. “…we are hard
wired for reciprocity, and have described reciprocity as the evolutionary basis for
cooperation in society”, therefore making volunteer actions normal, everyday functions
of life (Molm, 2010, 119).
As a volunteer for Heartland Hospice I gained invaluable knowledge and
experience with a large company providing end of life health services to patients and
families. My volunteer hours were spent in an office as well as direct patient visits,
providing a combination of reciprocal exchanges that will only enhance my clinical
knowledge for my (future) nursing career. Within the business office I provided
reciprocity to the office staff through my organized, detail oriented work ethic that
allowed for the staff to focus on their important job functions such as treating patients
instead of spending time organizing paper work as well as stocking and filing patient
chart documents. In addition to office work, I was given the opportunity to visit an
elderly, terminally ill patient in a skilled nursing home.
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This particular patient, whom I will call “Ms. X” (to protect her privacy and comply
with HIPPA laws), was 94 and had been at this particular facility for some time. Her
health history and diagnosis was not made available to me, however there was some
degree of Alzheimer’s present. When I notified the volunteer coordinator I was planning
on making my first visit, she mentioned that the case manager for Ms. X had recently
seen her and stated that Ms. X’s health had declined and she may not be coherent. My
first visit to Ms. X was frustrating as she repeatedly asked me the same questions over
and over during the two hours I was there, at one point she asked that if me being from
hospice meant that she was dying. This reciprocal exchange allowed me to learn patience
and empathy for a patient with declining mental abilities and my presence provided the
patient with mental stimulation through easy conversation. I visited Ms. X for a couple of
hours each week, helping her organize her photos on her wall, going through her photo
albums with her, and going to Kinkos to enlarge photos so that she could see them better.
I learned Ms. X was an art teacher, had traveled the world, and just until a few years ago
was ambulatory and well enough to travel to Mexico with her family and best friend. Ms.
X did not appear to be a patient near death, and I would like to believe that my presence
helped extend her life a little longer, “A growing body of literature in the field of aging
studies highlights the beneficial effect of offering support on living longer and preserving
mental and physician wellbeing” (Pound, 2011, p. 199). At my first visit I was told Ms. X
wasn’t doing well and had declined drastically, however just after three weeks of visits
Ms. X’s condition had improved so much that she no longer qualified for hospice
benefits. On my last visit a family friend of Ms. X stopped by and as Ms. X expressed her
appreciation for my visits and help with her photos, I stated it was a good thing she was
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‘graduating’ from hospice since that meant her health was better, but her family friend
mentioned the family was not happy since she was losing the support of hospice. At this
point I have to question the benefits of volunteering and service to hospice patients. In
some cases these patients and families would appreciate an extension on life, but what
about those without a direct family member or friend to support them on those extra
days? Reciprocal exchanges and relationships with patients are important, and I believe
that my time spent with Ms. X and Heartland Hospice were mutual, equal and reciprocal
relationships that fulfills CSUMB’s service learning philosophy of reciprocal community
partnerships.
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Appendix II
Survey presented to respondents:
This survey will collect and determine the attitudes of residents in Santa Cruz County (California) toward the legalization of physician-assisted death. This is a voluntary and anonymous survey. To participate, you must be 18 years or older and a resident of Santa Cruz county, all other participants will be discarded and not included in the final results. Due to the sensitive nature of this topic, please do not participate if you believe these questions may cause you undue emotional distress. If at any time during the survey you become emotionally distressed, you must stop the survey.
The responses from this survey will provide qualitative data that will be analyzed and combined into an undergraduate senior project for a Social & Behavioral Science major at California State University, Monterey Bay. The responses from this survey are completely anonymous; therefore results from this survey and the final project will not be directly reported to you. All information collected will be destroyed and the final project will be archived as a senior capstone project at California State University, Monterey Bay.
By participating in this survey you agree that the researcher has your permission to use your anonymous responses within their research project. By participating in this survey you understand and agree that the researcher and California State University, Monterey Bay cannot be held accountable or responsible for any undue mental distress or any other circumstances related to the questions and participation in this survey.
For the purpose of this survey, physician assisted death is defined as a physician assisting a patient diagnosed with a terminal illness, where the patient has initiated the request in terminating their life via medication prescription. Physicians would participate voluntarily.
Answer all of the survey questions with the following patient profile in mind;
The patient has a terminal illness and has been medically confirmed, The patient has been determined mentally competent & stable, The patient has initiated the request to their physician.
“Terminal illness” means an incurable and irreversible illness that has been medically confirmed and will, within reasonable medical judgment; result in death within six months. (SB 128, 2015).
“Medically confirmed” means the medical opinion of the attending physician has been confirmed by a consulting physician who has examined the individual and the individual’s relevant medical records. (SB 128, 2015).
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Reference:California Senate (2015). SB 128, End Of Life. Retrieved from http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160SB128&search_keywords=
1. My attitude toward the legalization of assisted death in California is positive
/supportive.
a. Strongly Agree
b. Agree
c. Disagree
d. Strongly Disagree
2. A person/patient with an illness must make every attempt to get better.
a. Strongly Agree
b. Agree
c. Disagree
d. Strongly Disagree
3. A terminally ill, mentally competent, adult should have a right to request assisted
death.
a. Strongly Agree
b. Agree
c. Disagree
d. Strongly Disagree
4. A patient declining treatment that may result in their death can be considered the
same as a patient requesting assisted death.
a. Strongly Agree
b. Agree
c. Disagree
d. Strongly Disagree
5. Physician assisted death is unethical.
a. Strongly Agree
b. Agree
c. Disagree
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d. Strongly Disagree
6. Senate Bill 128, “End of Life Options Act” has been introduced to make assisted
death in California legal for a terminally ill, mentally competent, adult patient. If
you were able to vote on this bill tomorrow, would you vote in support of the bill?
a. Yes
b. No
7. Senate Bill 128, “End of Life Options Act” has been introduced to make assisted
death in California legal for a terminally ill, mentally competent, adult patient. If
you were able to vote on this bill tomorrow, would you vote in support of the bill?
a. Yes
b. No
8. What is your attitude toward assemblywoman Shannon Grove’s reaction to Senate
Bill 128 “End of Life Options Act”; “although promoted as a compassionate
option for the terminally ill, this bill will have a corrupting influence on public
and private healthcare providers looking for ways to reduce the cost of end of life
care”.
a. Strongly Agree
b. Agree
c. Disagree
d. Strongly Disagree
9. If made legal in California, what type of safeguards should be in place?
10. Are you a healthcare provider? (MD, DDS, RN, etc.)
a. Yes
b. No
11. Does your healthcare occupation influence your attitude toward Physician
Assisted Death?
a. Yes
b. No
12. If you had a terminally ill, mentally competent, adult patient requesting assisted
death, would you participate in their request?
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ATTITUDES TOWARD ASSISTED DEATH
13. Do your previous experiences with death influence your attitude toward assisted
death?
a. Strongly Agree
b. Agree
c. Disagree
d. Strongly Disagree
14. If you were diagnosed with a terminal illness, were given six months or less to
live, and experiencing uncontrolled pain, would you request assisted death?
15. Would you describe yourself as, Very Religious, Somewhat Religious, Not.
a. Very religious (devotion/practice once or more a week)
b. Somewhat religious (devotion/practice 1-3 times a month)
c. Not religious
16. Do your religious views/beliefs influence your attitude toward assisted death?
a. Yes
b. No
17. What is the largest contributor to your attitude toward the legalization of assisted
death in California?
18. What is your age?
19. What political party do you identify with?
20. What is your gender?
21. Additional Comments:
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Appendix III
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