The Unique Spiritual Needs of Lesbian Women at End-of-life

A thesis by

Maura McKenney

Presented to

The Faculty of the

Graduate Theological Union

in partial fulfillment of the

requirements for the degree of

Master of Arts

Berkeley, California

September 8, 2014

Committee Signatures

______________________________________________ (Type first and last name below line), Coordinator, Date

______________________________________________(Type first and last name below line), Member, Date

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Table of Contents

Introduction ___________________________________________________ 1

Chapter One: Survey Results and Key Findings________________________ 17

Chapter Two: A Lesbian Life Course Perspective: In Sickness and in Health_ 32

Chapter Three: Cultural Competency_________________________________ 43

Conclusion_____________________________________________________ 63

Appendix 69

Bibliography 118

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Acknowledgements

I am extremely grateful to Dr. Dan Joslyn-Siemiatkoski, my thesis committee coordinator, academic advisor, and exceptional professor. His feedback and profound confidence in my ability to complete this thesis, paired with his graceand patience throughout the many ups and downs, made the completion of this thesis possible. I extend my sincere gratitude to The Rev. Dr. Jay Johnson for his enthusiasm andencouragement when this thesis was a just a kernel of an idea. I also thank him for his kind patience throughout thisprocess.

A mere “thank you” is insufficient to express the deep appreciation I have for my Portland, ME. support network. Tomy friend Christine Beaudette, excellent editor-in-chief andthoughtful listener, thank you for your willingness to help me in so many ways. To Dr. James Burnett and Norma Krause-Eule, my “dream team,” the completion of this thesis would have been impossible without your constant vigilance and unshakable belief in me. I am forever grateful to you all.

I am greatly indebted to the hundreds of anonymous lesbian women who took the time to truthfully answer some hard questions on an anonymous survey and for those who saw valuein the information and passed it along through social media.I also acknowledge the many, many lesbian women who could not fill out the survey, whether due to lack of Internet access or fear of being “outed.” To them I say that your sisters have represented you well but I hope to hear your stories soon.

And to my friend Anne Whittemore (1/31/62 – 4/29/13) who completed my survey unknowing that in a few short weeks she would be diagnosed with metastasized breast cancer and shockingly die less than a week later. I do not know Anne’s answers or opinions on the survey questions (I can make a

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pretty good guess!) but I do know that I carried her memory with me throughout the process of researching and writing this thesis and I do believe that she assisted me with some grammar choices. All the while, her picture was on my desk, reminding me that this project is personal – it’s all personal.

Glossary

LGBT – Lesbian, Gay, Bisexual, Transgender The acronym stands for the phrase “lesbian, gay, bisexual, and transgender community. This community consists of a broad coalition of groups that are diverse with respect to gender and sexual orientation. The use of this acronym is used with the understanding of the importance of recognizingthat the various populations represented by “L,” “G,” “B,” and “T” are distinct groups, each with its own characteristics.

Health Care Chaplain – A professionally trained member of a faith community who provides spiritual care to patients and staff at health care facilities.

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SBNR /Nones – The popular term used to describe individuals that are Spiritual but Not Religious, are not affiliated with any religion, yet maintain a spiritualty that is consistent with their unique belief system.

Religious - For the purpose of this thesis, "religious" includes communal worship and ritual, expected adherence to a prescribed set of beliefs about a higher power, a set of teachings, and/or a sense of belonging to a particular community and tradition.

Spiritual – For this thesis, spirituality can include personal, alternative ways of finding meaning and connectingwith a higher power. These ways may include private rituals and practices and a sense of personal and intimate connection with a divine presence, humanity and the environment.

Come out/Out – The term used by the LGBT community to signify the act of openly expressing a person’s sexual orientation.

In the Closet – In contrast to coming out, an individual whois in the closet does not share his/her sexual orientation for personal reasons or fear of harassment and discrimination.

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Preface

Judith1 and I met when I was assigned to be her

volunteer companion through a San Francisco Bay Area hospice

program. Judith was a woman in her late 70s suffering from

chronic heart disease and also exhibiting signs of

significant memory loss. She lived in a residential care

facility that provided around the clock care in a single-

family home located in a suburban area. When I met Judith

for the first time, I already knew certain things about her

from the hospice report. She was talkative and friendly and

had what could be described as a child-like demeanor. She

had no immediate family; she never married and had no

children. I also knew that Judith had given a neighbor power

of attorney and health care proxy, but that person rarely

visited. When I met her, Judith was polite, but seemed sad,

isolated and alone. The more time I spent with her and

talked about her life and mine, the more I sensed that she

was communicating with me in an unwritten but deeply

understood code. I knew that she was “outing” herself to me

1 Not her real name.

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in the only way she knew how. During our visits she told me

that she had never really left her small hometown and she

had conflicts with her Mormon family over the way she lived

her life. She deliberately shared with me her frustration

with having to work only “girly” jobs, how as a teenager she

babysat for money, but really would have rather mowed lawns.

She reminisced about her prowess on the softball field, her

ability to repair automobiles and her eventual turn to

alcohol for comfort when conflicts with her family became

too great. She described to me what seemed like a lonely,

closeted life, but one that was typical for her generation.

She continued to feed me small but clear clues to her

identity as the weeks wore on and we enjoyed a silent

conspiratorial connection. Judith did not have to make any

grand coming out pronouncement to me – we spoke in a code

that only two lesbians could decipher, and trust was the

key.

One afternoon I visited Judith in the common room of

her residential care facility. She and I were there with

four other residents when one of the caregivers came in and

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started conversing with each resident in turn. The

caregiver, who was not a trained social worker, medical

professional or chaplain but still a significant person in

the lives of all these women, started questioning each

person on aspects of their lives. She hoped, I believe, to

keep their memories active. She asked each person the same

questions: What is your husband’s name? What are the names

of your children? Do you have grandchildren? When the

caregiver came to Judith she simply skipped her. I sat in

shocked disbelief as the caregiver continued down the line

without engaging Judith in the conversation. I wonder if the

caregiver skipped Judith not out of any malice, but simply

because she did not know what to say to a woman who had

never married and never had children. Perhaps she could not

conceive of a life beyond the traditional heterosexual

family context. To her, and many others, a woman’s identity

is completely wrapped up in a heteronormative model.

Judith’s life, at the end of her life, became invisible.

All of her accomplishments, all of her loves and losses,

were rendered entirely invisible. From that experience, this

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thesis topic was born. The author requests that when reading

this thesis to please keep Judith’s story in mind along with

all the unnamed, unknown, unheard lesbian women like her

that have come before us; and the untold number that are

with us now.

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Introduction

Objectives

Invisibility. Silence. These words are often found in

discussions about the Lesbian, Gay, Bisexual, and

Transgender (LGBT) community and how they are or are not

perceived in a heteronormative and often-homophobic world.

This thesis provides quantitative and qualitative data that

examines a very specific, often invisible population –

lesbian women – and demonstrates that there is a unique and

identifiable spirituality in relation to how they envision

their end-of-life spiritual care needs, and describes how

health care chaplains must be better trained to identify and

minister to these spiritual needs. An underlying focus of

this thesis is to make visible the invisible, to measure the

immeasurable, and to speak what is often considered

unspeakable. It was important to the author to be very

intentional in pulling the “L” out of LGBT and highlight the

experience of lesbian women. This became apparent during an

initial search of the academic databases using the key words

1

“lesbian” and “end-of-life” that produced pages and pages of

studies of gay men in the context of the AIDS epidemic.

“When end-of-life issues have been discussed for the LGBT

population, attention has centered largely on HIV and AIDS.”

2 These studies are critical and necessary, but they do not

represent the end-of-life experience of lesbian women.

In Death, Dying and Social Differences, Katherine Cox writes:

“The voices of lesbians can be silenced or simply ‘tagged

on’ to gay men’s issues when in fact the lesbian experience

will be qualitatively different from both heterosexual women

and gay men.”3 This begs the question, what is the lesbian

experience and how can it be made visible? A review of the

current literature will illustrate the significant gap in

research specifically focused on lesbian women, and that the

studies that have been conducted are often limited by the

inability to reach a significant and diverse sample size of

2 Douglas C. Kimmel, Tara Rose, and Steven David, Lesbian, Gay, Bisexual, and Transgender Aging: Research and Clinical Perspectives (New York: Columbia University Press, 2006), 207.

3 Katherine Cox, “Sexual Orientation,” in Death, Dying, and Social Differences, 2 ed., eds. David Oliviere, Barbara Monroe, and Sheila Payne (Oxford: Oxford University Press, USA, 2012), 197.

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the target population. This lack of response is often due to

the legitimate and ongoing fear of discrimination that may

come with disclosure of sexual orientation.4 This project

identified the attitudes of lesbian women on the topics of

spirituality and end-of-life care through an online survey

and analyzed both the qualitative and quantitative data

collected from 450 self-identified lesbian respondents. The

results of the 35-question survey identify the range of

religiosity and spirituality of the women surveyed, along

with their experiences of homophobia from religious

organizations and how that those experiences effects their

outlook on spiritual care at end-of-life. The findings

indicate a strong rejection of organized religion in favor

of a combination of spiritualties and spiritual practices.

The respondents also reported a hopeful but guarded attitude

towards spiritual caregivers despite being witness to, and

the victims of, a history of religious persecution based on

their homosexuality. This spiritual resiliency, tempered

4 Nancy A. Orel, "Gay, Lesbian, and Bisexual Elders," Journal of Gerontological Social Work 43, no. 2-3 (September 2004): 57-7, accessed July 1, 2014, http://dx.doi.org/10.1300/J083v43n02_05.Citation tbd

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with experiential pragmatism is an unanticipated result from

the survey.

The author’s experience with Judith recounted in the

preface of this thesis prompted some compelling questions.

Are lesbians of all ages, but especially the elderly, ever

really seen, heard and understood by health care chaplains

and other spiritual caregivers? Do lesbian women want

spiritual care at end-of-life, and if so, by whom? Why would

a lesbian women’s end-of-life experience differ from anyone

else’s? This study reduces the research gap by asking

questions that relate through the nexus of three seemingly

disparate topics:

The historical and social life experiences of lesbian

women and how these experiences influence their

religious/spiritual and end-of-life needs

The survey for this project (Lesbian Views on Spiritual Care

and End-of-life Issues) reveals that close to 70% of

respondents identify as religiously unaffiliated: a

population often referred to as “nones” or spiritual

but not religious (SBNR). This finding represents a

4

significantly higher percentage than reported in the

2008 Pew Research Study. 5

The current cultural competency training of spiritual

care providers often lacks insight into the lesbian

community’s history and spirituality, therefore is

insufficient to meet the needs of this community at

end-of-life.

This thesis will identify the spiritual needs of

the lesbian population by investigating the role

homophobia played, and still plays in health care,

aging, relationships with family of origin, and the

complex relationship with the LGBT community and

organized religion. This is a misunderstood set of

problems experienced by a misunderstood population and

end-of-life should not be the time to recognize the

need for training and outreach.

5 SBNR or ‘nones’ is a complex topic with numerous definitions, but it is essentially a label used to describe the diverse and often misunderstood group of religiously unaffiliated. The 2008 Pew Research Center’s “US Religious Landscape Survey” on the unaffiliated and will bediscussed in greater length in Chapter 2.

5

There is a significant need for further research and

academic interest into the lesbian population, especially

the aging. The United States Administration on Aging

predicts that there will be approximately 38 million

Americans over the age of 65 by the year 2030.6 Of that

total, the National Gay and Lesbian Task Force (NGLTF)

estimates the above figure includes 1.4 to 3.8 million

lesbian, gay, bisexual, and transgender (LGBT) adults.7

Knowing that on average, women live longer than men, the

number of aging lesbian women approaching end-of-life will

be significant. And, as we all know too well, young people

also die. It is for this reason that the survey that

supports this project was open to lesbians of all ages,

6 Department of Health and Human Service Administration on Aging, “Projections of Future Growth by Age and Gender,” accessed December 16, 2012. http://www.aoa.gov/Aging_Statistics/future_growth/future_growth.aspx#gender.7 Gary L. Stein, Nancy L. Beckerman, and Patricia A. Sherman, “Lesbian and Gay Elders and Long-Term Care: Identifying the Unique Psychosocial Perspectives and Challenges”, Journal of Gerontological Social Work 53, no. 5 (July 2010): 421-35, accessed April 20, 2013. http://dx.doi.org/10.1080/01634372.2010.496478 NGLTF based on 5-10% of pop being LGBT

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allowing comparisons from different generations on the

subjects of spiritual care and end-of-life.

This project also addresses potentially missed

opportunities by health care chaplains due to insufficient

training materials (LGBT cultural competency, religious

diversity, and sexual/gender diversity) used by health care

and chaplaincy organizations. Professional Spiritual & Pastoral Care:

A Practical Clergy and Chaplain’s Handbook8 offers an excellent

chapter on spiritual care for the LGBT community. The

chapter depicts ways that spiritual caregivers can show that

they are safe allies to the LGBT community: the use of

inclusive language, not assuming heterosexuality is the

norm, and by proactively seeking out knowledge and

understanding of the LGBT culture. This final point is an

important and often overlooked factor, leading to a tragic

disconnect between the spiritual seeker and the spiritual

caregiver. The survey reports a large percentage of lesbian

women state that they would hope for spiritual care at end-

8 Nancy K. Anderson and Jo Clare Wilson, “Gay, Lesbian, Bisexual, and Transgendered (GLBT) People” in Stephen Roberts, ed., Professional Spiritual and Pastoral Care: A Practical Clergy and Chaplain's Handbook (Woodstock, Vt.: SkyLight Paths Publishers., 2012), 282-290.

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of-life, for many, too much harm has been done and they just

would not trust, “take the chance,” or welcome a hospital

chaplain into that situation. The survey results provided

interesting and unexpected results around the question of

trust. The large number of non-religious SBNR respondents

along with a large number of women who reported negative

(many horribly negative) experiences with organized

religion, pointed in the direction of a population that

would have negative attitudes toward hospital chaplains.

Yet, a surprising number of lesbian women made comments of

amazing generosity and hopefulness toward receiving

spiritual care at end-of-life from a religiously affiliated.

These finding will be analyzed in Chapter 1.

Subject Literature Review

Death Awareness Movement

For most of humankind’s existence, death was a constant

and intimate part of daily life. There is debate among

anthropologist as to whether fear of death is an innate

8

biological function or a culturally learned response; but it

is generally agreed upon that a shared and universal fear of

death permeates most cultures throughout history and

prehistory.9 Archaeological evidence of ancient

civilizations’ religious and ritualistic methods of coping

with death is evidence of this global and timeless dance

with death. Archaeological data collected on death and

mourning rituals along with cultural funerary practices

appears to be among the fundamental elements necessary for

the reconstruction of the social, cultural, and economic

dynamics of ancient communities.10 Every culture creates

meaning around death, and our post-modern Western culture is

no exception.

Many contemporary authors have posited about what is

considered a “good death” in our society. In light of

America's diversity, is it possible—or desirable—to

9 Moore, Calvin Conzelus, Williamson, John B., “The Universal Fear of Death and the Cultural Response,” in Handbook of Death and Dying, ed. Clifton D. Bryant, vol. 1, The Presence of Death (Thousand Oaks, CA: SAGE Publications, Inc, 2003), 3-4.10 Nicola Laneri, “Performing Death: Social Analyses of Funerary Traditions in the Ancient Mediterranean,”, accessed July 18, 2014, https://oi.uchicago.edu/research/symposia/performing-death-social-analyses-funerary-traditions-ancient-mediterranean-2.

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construct one image of the good death and what it might

mean to die well? Chapter 3 will discuss the idea and

the idealized idea of what it means to have a good death

In Death and Dying, Spirituality and Religions: A Study in the Death

Awareness Movement, author Lucy Bregman, describes the

death awareness movement, beginning in the late 1960’s,

studying death from the perspective of a multitude of

disciplines. The scientific study of death (thanatology)

is itself multi-disciplined, and the death awareness

movement has an even greater scope of study. Bregman

describes the diversity of the movement: "From its

inception, the death awareness movement has always been

interdisciplinary, inviting the participation of

chaplains, psychologists, nurses, doctors, social

workers, university researchers in all of these fields.

Anthropologists and sociologists, pastoral counselors,

philosophers and teachers of meditation have all

contributed, as have artists and musicians."11 In volume

11 Lucy Bregman, American University Studies. Series Vii, Theology and Religion, vol. 228, Death and Dying, Spirituality, and Religions: a Study of the Death Awareness Movement (New York: Peter Lang, 2003), 18.

10

one of the expansive Handbook on Death & Dying12, Kenneth

Doka’s chapter on the death awareness movement presents

a succinct overview on what he describes as “an

amorphous movement with numerous roots.”13 From these

definitions, it is apparent that the death awareness

movement values religion and spirituality (chaplains,

pastoral counselors, and arguably artists and musicians)

among its roots, and therefore the focus of this study

fits well within this movement. In light of America's

diversity, is it possible—or desirable—to construct one

image of the good death and what it might mean to die

well? Chapter 3 will discuss the idea and the idealized

idea of what it means to have a good death

By the late 1960’s and through the 1970’s this network

of roots crept into American living rooms through best

selling books and through the groundbreaking British export

of hospice. Many attribute the end-of-life dialogue

expanding both academically and popularly to Elisabeth

12 Doka Kenneth J., ed., “The Death Awareness Movement:,” in Handbook of Death and Dying, ed. Clifton D. Bryant, vol. 1, The Presence of Death (ThousandOaks, CA: SAGE Publications, Inc, 2003), 50.13 Ibid. 50.

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Kübler-Ross’ widely read book, On Death and Dying.14 This book

published in 1969 offered the reader an emotionally

relatable narrative and an easily understood psychology

behind the dying and bereavement process. This book brought

death out of the closet and challenged the modern conception

that the end-of-life process is primarily a medical problem

to be defeated or delayed at all costs. Around this time in

Great Britain, Cicely Saunders was developing and growing a

hospice movement that challenged the medical establishment

and focused on pain management and spiritual care for the

dying. Also during this decade, Jessica Mitford wrote

pointedly about death and the American funeral industry in

in her best selling, The American Way of Death.15 In the American

1960s, the subject of death became a topic to discuss at

cocktail parties and book clubs, not just whispered about in

sanitized hospital hallways with equally sanitized language.

The concept of ‘a good death’ continued and may have been

unintentionally bolstered by Kübler-Ross’ equally loved and

14 Elisabeth Kübler-Ross, On Death and Dying (New York: The Macmillan Company, 1969), 122.15 Jessica Mitford, The American Way of Death Revisited, Reprint ed. (New York: Vintage, 2000).

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loathed stages of death. It is important to note that these

stages (Denial and Isolation, Anger, Bargaining, Depression,

and Acceptance) were never intended to be a rigid set of

rules; rather, the author remarks: “these means (stages)

will last for different periods of time and will replace

each other or exist at times side-by-side.”16 Despite her

protestations, Kübler-Ross’ stages live on as an iconic (and

refuted) understanding of American death and dying.

The death awareness movement endeavors to educate the

population about the complexities and the problems of the

“good death” illusion. The growth of hospice care, family

discussions on advance directives and end-of-life wishes,

debates on the ethics and use of life-sustaining technology

are all ways in which the goal is for a better, more person-

centered death. Merrill Collett’s, At Home with Dying: A Zen

Hospice Approach,17 challenges the concept of a good death

throughout her work: “There is a great danger of defining

what death ought to look like…A good death suggests there is

16 Kübler-Ross,122.17 Merrill Collett, At Home with Dying: A Zen Hospice Approach (Boston: Shambhala, 1999).

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an absolute standard by which to measure whether a death has

succeeded or failed.”18 Despite the reasons given for a

shift to a less dichotomous phrase, some studies in medical

journals still seek to quantify aspects of a good death to

improve the quality of care. “In Search of a Good Death:

Observations of Patients, Families, and Providers,”19 the

authors acknowledge that although there is no ‘right way to

die,’ there are themes that need to be explored. This

comprehensive study included terminally ill patients, their

families and caregivers, physicians, social workers,

chaplains and hospice volunteers. The study identified six

components of what the authors termed a good death:

Pain and symptom management Clear decision making Preparation for death Completion (spirituality, life review) Contributing to others Affirmation of the whole person20

The final point, affirmation of the whole person, is an

especially important factor when discussing the spiritual

18 Ibid., 4219 Karen E. Steinhauser and Elizabeth C. Clipp, “In Search of a Good Death: Observations of Patients, Families, and Providers”, Annals of Internal Medicine 132, no. 10 (2000): 825-32.20 Ibid., 825.

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needs of lesbian women and will be discussed in depth in

chapter 2 in the discussion on personal history and life

course.

Shared decision-making is a new and much needed model

for the health care system. In 2000, an end-of-life study

published in the Journal of American Medicine, states:

“Physicians should also recognize that there is no one

definition of a good death. Quality care at the end-of-life

is highly individual and should be achieved through a

process of shared decision-making and clear communication

that acknowledges the values and preferences of patients and

their families.”21 This statement is prompted by the fact

that very few physicians in the study ever inquired about

their patients’ “values and preferences” and that actually

it is the physician’s values and preferences became the de

facto definition a good death, regardless of whether it lined

up with the patient’s wishes. This is an important factor

when considering how and if lesbian women’s values and

21 Karen E. Steinhauser, et al, “Factors Considered Important at the Endof Life by Patients, Family, Physicians, and Other Care Providers”, JAMA284, no. 19 (November 2000): 2476-82, accessed September 9, 2013, http://dx.doi.org/10.1001/jama.284.19.2476.

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preferences are understood and respected by both the medical

and spiritual care teams. Some in the medical profession are

striving to better educate the next generation of physicians

about treating end-of-life as a condition effecting the

whole person and not solely a medical problem to fix. The

fact remains that most American medical schools still have

little to no end-of-life training,22 but there are tangible

efforts underway to improve overall care at end-of-life. In

1997 the Institute of Medicine published Approaching Death:

Improving Care at the End of Life. 23 This massive report (456 pages)

covers a wide range of issues such as quality of care,

matters of finance and economics, physician communications

of options and guidelines to better end-of-life care

education, which includes the importance of including

spiritual care in the coordination of care. Large,

comprehensive studies like the one described above, along

with physician, author and public advocate Dr. Ira Byock 22 Denise Bickel-Swenson, “End-of-Life Training in U.S. Medical Schools:A Systematic Literature Review”, Journal of Palliative Medicine 10, no. 1 (February 2007): 229-35, accessed April 1, 2014, http://dx.doi.org/10.1089/jpm.2006.0102.R1.23 Marilyn J. Field and Christine K. Cassel, eds., Approaching Death: Improving Care at the End of Life (Washington, DC: National Academy Press, 1997).

16

work from both inside the health care industry and also

closely with dying people and their loved ones to advocate

for increased medical training in palliative care and end-

of-life for physicians and medical school students. His book

The Best Care Possible directly challenges the current medical

system and seeks to transform the way physician view and

treat people with terminal illness.24 Dr. Byock is a

proponent of the positive impact that spirituality has on

both the person who is terminally ill and the physician and

staff caring for them. As keynote speaker in a conference on

hospice and palliative care, Dr. Byock spoke about how, in

fact, physicians can still be curative, long after the

diagnosis is terminal. When a young doctor inquired how he

does this, Dr. Byock replied, “We actively love them.”25

Lesbian Spirituality

LGBT spirituality and its relationship with organized

religion is a much-studied and written about subject, yet

24 Ira Byock, The Best Care Possible: A Physician's Quest to Transform Care through the End of Life (New York: Avery, 2012), 1.25 Ira Byock, November 7, 2013, Palliative Care, Hospice of Southern Maine Thresholds Conference. Unpublished.

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identifying what is be unique about lesbian spirituality is

often overlooked or subsumed in the larger discussion of

LGBT spirituality and religiosity. In the book Gay Religion26,

the introduction implies that the book includes the entire

LGBT community, but in fact, only 2 chapters out of 21 are

actually centered on the religious and spiritual experiences

of lesbian women. Social worker and researcher Ashley Varner

supports the concern that lesbian women are often overlooked

in these studies. In “Spirituality and Religion Among

Lesbian Women Diagnosed with Cancer: A Qualitative Study,”27

she writes, “The majority of current studies of gay and

lesbian spirituality and religion focus on gay men, adding

lesbian women almost as an afterthought. Studies of lesbian

spirituality seem to be absorbed or contained by research

and theory about feminist theology and spirituality.”28 An

example of this criticism is found in a 2005 study by P.

26 Scott Thumma and Edward R. Gray, eds., Gay Religion (Walnut Creek, CA: AltaMira Press, 2005).27 Ashley Varner, “Spirituality and Religion Among Lesbian Women Diagnosed with Cancer”, Journal of Psychosocial Oncology 22, no. 1 (November 2004): 75-89, accessed March 27, 2013, http://dx.doi.org/10.1300/J077v22n01_05.28 Ibid., 79.

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Philip Tan, “The Importance of Spirituality Among Gay and

Lesbian Individuals.”29 This study concluded that gay and

lesbian individuals have both a high level of Religious Well

Being (RWB) and a high level of Existential well being

(EWB). This interesting result is diminished when a close

look at the data demographics reveals that 75% of the study

respondents were male. When reporting on the study’s

limitations, lack of lesbian women respondents was not among

them.30

This research review turned up few examples where

findings where specifically on or about the spirituality

within the lesbian community, and if they did, it was often

a very short chapter in a very long book. For example, the

book Health Care & Spirituality: Listening, Assessing, Caring31

comprehensively includes a sections on ministering to

various religions and beliefs systems, ministering to

29 P. Philip Tan, “The Importance of Spirituality Among Gay and Lesbian Individuals”, Journal of Homosexuality 49, no. 2 (August 2005): 135-44, accessed December 27, 2013, http://dx.doi.org/10.1300/J082v49n02_08.30 Ibid., 139.31 Richard B. Gilbert, Health Care and Spirituality: Listening, Assessing, Caring, Death, Value, and Meaning Series (Amityville, N.Y.: Baywood Pub. Co, 2002),

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special populations (Alzheimer’s, HIV-AIDS, domestic abuse

victims, etc.) and a section on what is called ethnic and

gender perspectives. In this last section there is a chapter

titled “The Gay-Lesbian-Bisexual-Transgendered (sic) Patient.” This

chapter, whose inclusive title suggests a wide range of

experiences from a diverse population, is only about six

pages long. Progress? Perhaps, but in contrast the chapter

in the same book concerning ministering to the (assumed)

heterosexual male patient receives twenty-four pages of

attention. There are recent studies whose intentional

methodology corrects these exclusions. “The Meanings and

Manifestations of Religion and Spirituality among Lesbian,

Gay, Bisexual, and Transgender Adults” by Perry N. Halkitis,

et al,32 is significantly more balanced,33 reporting 47%

lesbian women as respondents. This informative study

concludes that “many [in the LGBT community] express their

religious and spiritual commitment by engaging in such 32 Perry N. Halkitis et al., “The Meanings and Manifestations of Religion and Spirituality among Lesbian, Gay, Bisexual, and Transgender Adults”, Journal of Adult Development 16, no. 4 (December 2009): 250-62, accessed October 17, 2013, http://dx.doi.org/10.1007/s10804-009-9071-1.33 The author recognizes that the balance is mitigated by the fact that although the title of the study includes transgender individuals, less than 2% of respondents identified as transgender.

20

private acts of devotion as meditation and prayer…and the

antagonism with which many religions approach sexuality in

general, and homosexuality in particular, has contributed to

a legacy of silence about the spiritual lives of LGBT

individuals.”34 This concept of a “legacy of silence,”

(explored in detail in Chapter 2 ) combined with the layers

of invisibility and the psychosocial-spiritual factors

identified as important to lesbian women contribute to the

thesis of this project.

Chaplaincy Training

Historically, a chaplain served as Christian minister

in a Christian setting, and although now not all hospitals

are run by the religious, the chaplaincy staff remains

overwhelmingly Christian.35 Today, the term chaplain may

describe a person ordained or endorsed by any faith

tradition, who ministers outside the traditional

congregational construct. Health care, military, and

34 Ibid., 251. Emphasis mine.35 Wendy Cadge, Paging God: Religion in the Halls of Medicine (Chicago: University Of Chicago Press, 2013). 1-18.

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academic chaplains are commonly known, but chaplains can

also be found serving in corporations, law enforcement,

correctional facilities, and sports teams. The 2014 season

of the popular television show American Idol provided

chaplains to provide spiritual care to the contestants. As

the definition of spirituality widens, and the ways our

culture seeks spiritual care, so does the role of the

chaplain.

The current role and training of the health care

chaplains in hospitals, skilled nursing, and hospices is at

the center of this study. Wendy Cadge’s, Paging God: Religion in

the Halls of Medicine36 provides the reader with a blend of

historical and statistical information on the shifting roles

and identities health care chaplains. Utilizing first hand

interviews and personal observations on the ways chaplains

cope with the changing attitudes towards spirituality and

medicine and the role of spiritual caregivers in the medical

environment, Cadge offers a significant insight into the

work of the chaplain in the 21st century.

36Ibid.,

22

The role and practice of chaplains is changing, but the

required training has not. Since the 1960’s most health care

environments require chaplains to have completed four units

of Clinical Pastoral Education (CPE). This hands-on,

intensive training is defined, in part by the Association

for Clinical Pastoral Education (ACPE) as an interfaith

professional education for ministry that brings theological

students and ministers of all faiths into supervised

encounter with persons in crisis. Out of an intense

involvement with persons in need, and the feedback from

peers and teachers, students develop new awareness of

themselves as persons and of the needs of those to whom they

minister. 37 CPE is a demanding and often rewarding

experience to the many students (most seminarians are

required to take one unit by their denomination) or

laypersons who choose the experience for a variety of

reasons.

37 “ACPE FAQ,” ACPE: The Association for Clinical Pastoral Education, Inc., November 3, 2013, accessed November 3, 2013, http://www.acpe.edu/StudentsFAQ.html.

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Most people who complete CPE will not become

professional chaplains; but those who do must have more CPE

training in order to be certified. In 2004, the major

certification bodies in North America developed common

standards for professional chaplains. A professional

chaplain is expected to complete 50 hours of continuing

education annually. According to the Common Standards the

candidate will demonstrate the ability to “provide pastoral

care that reflects diversity and differences including, but

not limited to culture, gender, sexual orientation and

spiritual/religious practices.”38 The additional training

required for these common standards is available through a

variety of professional organizations, and include LGBT

cultural competencies. In chapter 3, I will offer examples

of excellent training that is available for spiritual care

departments, as well as examples of missed opportunities to

provide information and education about the spiritual care

needs of the LGBT community and how that affects lesbian

38 “Common Standard for Professional Chaplaincy,” Association of Professional Chaplains, accessed April 3, 2013, http://www.professionalchaplains.org/files/professional_standards/common_standards/common_standards_professional_chaplaincy.pdf.

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women in a health care setting. Training is desperately

needed. Reading through “The Development, Status, and Future

of Healthcare Chaplaincy”39 published in the Southern

Medical Journal; a term was used that immediately seemed

out-of-place. When describing the common standard shown

above, the authors chose to replace the term ‘sexual

orientation’ with the term ‘lifestyle’ - a small, but very

significant and damaging professional choice in words.

Chapter Outline

The complex yet complimentary nature of the subjects

addressed above reflects the multi-dimensional approach

required for this thesis. Seemingly unrelated facts will

become important if the reader takes a step back and reviews

the hypothetical end-of-life scene. Dying well requires that

the whole person be recognized and attended to: physically,

emotionally and spiritually. In Chapter 1, selected

questions and findings from the survey, Lesbian Views on Spiritual

39 Tim Ford and Alexander Tartaglia, “The Development, Status, and Future of Healthcare Chaplaincy”, Southern Medical Journal 99, no. 6 (2006): 677.

25

Care and End-of-life Issues, are represented in graphs and the

results are analyzed and discussed. The survey data compiled

for this project reveals that close to 70% of respondents

described themselves as spiritual or a combination of

spiritual and religious. This is not a new trend. In 1984,

the groundbreaking National Lesbian Health Care Survey40 was

published. With data from almost 2,000 lesbian women, this

survey stands out in its time for its comprehensive data

collection. In the study, 66% of respondents described

themselves as “none” when asked about religious affiliation.

The study did not distinguish between the vagaries of

defining religious, spiritual, other, or none; but

nonetheless, there is a clear tendency away from organized

religion as early as 1984.

The second major issue investigated concerns the life

history of lesbian women and how that life course impacts

the issue of invisibility in American culture in general and

40 Judith B. Bradford and Caitlin C. Ryan, “National Lesbian Health CareSurvey, 1984-1985”, ICPSR Data Holdings Icpsr 08991-V1 (March 1989): 1, accessed July 12,2013, http://dx.doi.org/10.3886/ICPSR08991.v1.

26

also in the health care field and aging issues – all

possibly impacting end-of-life care.

The third chapter examines LGBT community as a valid culture

that deserves to be respected, valued, and studied. Some

chaplaincy training material is reviewed to examine if or

how LGBT is trained in cultural competency training, and if

SBNR is considered the major trend in spirituality that it

is, and trained as such.

This thesis is multifaceted, but it answers three basic

questions: Are the lesbian women from the survey (and by

extension, all lesbian women) seen as spiritual beings? Do

health care chaplains have the proper attitude and training

to emotionally care for and spiritually comfort a lesbian

woman at end-of-life? And even if the chaplain is fully

trained, open, and affirming, will many lesbian women even

dare to let them in the room? Through quantitative and

qualitative data collected through an online survey, with an

acknowledgment of the historical context of the life

experiences of lesbian women, and an examination into the

professional and spiritual culture of health care chaplains,

27

this thesis identifies the ways that lesbian women’s unique

spirituality can be understood, acknowledged, and they, as a

whole person can be finally seen.

28