InFocus Article

Appreciating the Legacy

of Kubler-Ross: One Clinical
Ethicists Perspective
Daniel O. Dugan, Chicago Medical School
Elisabeth Kubler-Ross had a brief intersection with
the nascent and emerging eld and practice of Clini-
cal Ethics in the 1970s. She fertilized and inuenced
the eld in distinctive ways, some more obvious
than others. Id like to mark her death by briey
discussing three ways in which Kubler-Rosss work
intersected and affected clinical ethics.
(a) It changed the context of clinical ethics, by open-
ing the door for the arrival of hospice and pal-
liative care;
(b) It changed the content of an important domain in
clinical ethics, by expandingthe range of options
and alternative treatments in informed con-
sent discussions in the care of individual dying
patients;
(c) It enriched the process of doing clinical ethics,
by raising practitioners awareness of recogniz-
able features of the topography of death and
dyingfeatures both of the experiences of hos-
pitalized patients and their families, and of the
coping strategies of professional caregivers.
Elisabeths professional style was unique, blend-
ing autobiographical and clinical narratives, aiming
to enkindle her listeners and readers hearts and en-
able their hands, as well as to enlighten their minds.
In a similar spirit, I would like to present my points
by blending some autobiographical with some ex-
pository observations.
A NEW APPROACH AT THE TIME
Elisabeth stood out from the crowd of her con-
temporary death and dying researchers and writ-
ers. Her work with dying persons and their care-
givers had an enormous and growing impact on
American culture and society in the 1970s. To-
day many healthcare workers, university students,
and educated laypersons view and think differently
about death and dying, and about the care of dying
persons and their families, from their pre-Kubler-
Ross counterparts. Hospice and Palliative Care pro-
grams and services, so widespread and visible in the
topography of contemporary health care, entered
the U.S. health care systemin the 1970s. They took
root and began growing in large measure because of
Kubler-Rosss unrelenting, creative, and effective
efforts to re-humanize death and dying in a soci-
ety and health care system that had come to banish
awareness and reference to these fundamental events
of personal and human experience, and to sanitize
caregivers feelings about these events with a veneer
of professionalism. Today end of life care has
become a priority, even a board certication spe-
cialty, in medicine. These are largely components of
Kubler-Rosss legacy in U.S. society and in health
care in particular.
Remarkably, while Elisabeth wrote several
books and many articles, her actual body of work
consisted less in her publications than in her en-
counters with tens of thousands of students, teach-
ers, health care workers, patients, and families. She
made her difference by challenging, educating, and
empowering audiences, intensive seminar groups,
and individuals. Like ripples radiating outwards in
a pond, thousands of people left their experiential-
educational encounters with Elisabeth enlightened,
energized, and empowered to return to their lives
and work with different attitudes, more recogniz-
able feelings, and expanded practical skill sets.
So the cultural phenomenon that Kubler-Ross
became was probably more a matter of what she
did in her encounters with groups and individ-
uals in lectures and seminars, than of what she
wrote. Many other thoughtful scholars and clin-
icians in medicine, psychology, and religion in
the seventiesthe decade of Kubler-Rosss ascen-
dancy into and retreat from publicpublished
books and gave talks relating stories of hospital-
ized dying patients. Like Elisabeth, they exposed
the prevalence of institutionalized patterns of dis-
comfort, avoidance, and neglect in physicians and
nurses treatment of dying patients. Many even de-
scribed stages or phases in patients processes
The American Journal of Bioethics, 4(4): W24W28, 2004 ajob W24
Copyright c Taylor & Francis, Inc.
ISSN: 1526-5161 print / 1536-0075 online
DOI: 10.1080/15265160490908112
Bioethics Remembers Elisabeth Kubler-Ross
of assimilating the harsh realities of terminal di-
agnoses and signicant loss (Hinton 1967; Parkes
1972; Bowlby 1961; Westberg 1979). Yet it is
Kubler-Rosss name that is most associated with the
percept and concept of stages of dying, grieving,
and the human assimilation of signicant loss.
Ernest Beckers The Denial of Death (1973) ef-
fectively portrayed the dominant American societal
attitude to death as one of dread and fascination.
Denying and avoiding death were ways of reacting
to the dread, while television images of body bags
and executions in the Vietnam War reected the
equal and opposite societal fascination. Yet when
most people use or hear the phrase, he is in denial,
it is Kubler-Rosss version of denial that most often
frames their perception of its meaning.
AN ENCOUNTER OF THE THIRD KIND
My rst encounter with Elisabeth was in 1973. As-
signed to teach a university course called Death
and Religion, I was one of ve hundred or so in
a university auditorium in Hayward, California. I
attended her presentation on a Friday evening in
May, hoping that I could glean some new ideas.
When the applause began in the auditorium, I
looked for Dr. Kubler-Ross on the stage. At rst I
couldnt see anybody. Then I saw a tuft of brown
hair, barely visible over the top of the podium.
Then I noticed the thick-lensed glasses on a sharp-
featured face. As Elisabeth stepped from behind the
podium, smiling, I remember thinking, She moves
like a bird! Short in stature, slender and wiry, she
wavedto friends andacquaintances inthe seats of the
auditorium.
Abruptly she walked back to the podium and
began her talk. The place went silent, as she started
telling her stories. She told of discovering butter-
ies by the score on the walls of Nazi death camps,
butteries drawn by children on their way into gas
chambers. She wondered, What must these chil-
dren have been feeling as they drew near to their
deaths? And What message were they sending to
the living, to the rest of us?
In her straightforward, non-academic way and
with a Swiss German accent, Elisabeth told stories
of her arrival in the United States, her work as a
psychiatrist in different settings, and her discovery
of the widespread shunning of dying patients in
hospitals by physicians and. What are they afraid
of? she wondered.
As she told her stories of patients, family mem-
bers, nurses, and physicians, Elisabeth spoke simply
and directly, almost casually, as though she were in
dialogue with a single person. She spoke of relating
to dying patients on the basis of her humanity, not
her psychiatry. She connected through her own hu-
manity and that of the patients in her stories to the
common humanity of those in the audience. I know
that because of my distinct memory of the standing
ovation that she received at the end of her presenta-
tion, and the strong feeling of gratitude to Elisabeth
emanating through that applause for what she had
givenboth to her patients and to those now clap-
ping their hands.
I left that presentation not only with some ideas
for my course, but also with a realization that I
needed to learn more from dying patients and their
families directly, and not just from authorities in
the eld, in order to teach the course. On the drive
home I decided to offer my services as a volunteer in
the local community hospital, and see if I could nd
a way to be of help to patients and their families,
including dying patients, while putting myself in a
position to learn what they might share of their ex-
periences withme. Lettingthe patient be a teacher
proved to be a simple yet powerful lesson for me.
Two years later, I resigned my teaching posi-
tion at the university and accepted a clinical-and-
teaching role in another local hospital. Out of this
work, which involved developing emotional stress
management systems for patients, families, and
staff, emerged the Clinical Ethics Program, rst as
a committee, and then as a full-time consultation
service.
While I drew, in my Clinical Ethics work, on
knowledge and skills outside of and beyond the
domain of death and dying, I also incorporated
emotional awareness, conceptual tools, ideas, skills,
and a growing interest in the goal of rehumanizing
health care, some seeds of which I can nowsee in ret-
rospect as having been stimulated by Kubler-Rosss
work and teaching.
Many of the ethics consultation cases in the
early days of ethics committees, from1979 through
1984, involved communicating with dying patients
and with their families. Physicians, nurses, and
other professional caregivers, too, sometimes needed
assistance and support in caring for patients and
families who had to make decisions about medi-
cal treatments in the technologically-charged and
emotionally-turbulent waters of the hospital.
CHANGES IN THE HEALTHCARE LANDSCAPE
Kubler-Rosss work and inuence helped hospices
andpalliative care programs to emerge, dene them-
selves, attain legitimacy, and become stable features
Fall 2004, Volume 4, Number 4 ajob W25
The American Journal of Bioethics
of the healthcare topography. The emergence of hos-
pices and palliative care programs as tangible op-
tions for patients and families, of course, changed
the context of clinical ethics for committees and
individual practitioners, and helped a culture en-
couraging open and timely communications about
life-sustaining treatments to take hold and grow.
Anticipating the end of life (advance care plan-
ning), too, evenina recently death-denying health
care system, came to be seen as acceptable and
important.
Kubler-Rosss work and inuence helped two
generations of nurses and physicians recognize and
understand their own feelings about death and dy-
ing, and to move beyond their denial of their fears
to increasing comfort levels and competencies in
relating to dying patients, their families, and each
other. Kubler-Ross says that she framed the stages
as a lens, a tool to help professional caregivers, moti-
vated by compassion for both: My goal was to break
through the layer of professional denial that prohib-
ited patients fromairing their inner-most concerns
(Kubler-Ross n.d.).
KUBLER-ROSSS WITHDRAWAL AND RETURN
Inthe seventeenthcentury, La Rochefoucauldwrote:
Neither the sun nor death can be looked at with
a steady eye (Hinton 1967, i). Prior to Kubler-
Ross, physicians and nurses looked away; the glare
was paralyzing and emotionally disabling. Practices
and rituals in hospitals arose from this diverting of
the gaze that remain in our own time, despite the
emergence of hospice and palliative care and the
legitimization of dealing with end of life issues.
For instance, hospital staff still avoid mentioning
the word death; they term a patients death an
expiration. And hospital transporters still push
wheeled gurneys whose false and shrouded bottom
sections contain the bodies of patients who have
died.
Still, Kubler-Ross made a difference by chang-
ing death and dying from a blinding and para-
lyzing totem realm, that banished and isolated the
dying, into a human process and event. She dis-
tributed sunglasses, softening the glare and allow-
ing the individual person to become visible. Her
stages of dying gave caregivers the lenses through
which they can provide human contact and support,
staying with patients and families through the end
of life instead of abandoning themin fear and denial.
Kubler-Ross herself, ironically, moved away
from providing human mediation with her stories
and her person between caregivers and the blinding
glare of death and dying, from helping death be-
come human. She seemed to take off her own sun-
glasses in the 1980s and early 1990s, looking away
from the humanity of dying patients and looking
more into the glare of the mystery of death it-
self. Her ongoing work and her writings seemed
to lose the educational and therapeutically empow-
ering impact of her earlier work on the stages.
Death, she began to teach and write, does not
exist. I believe that she was still acting out of com-
passion for patients and caregivers during this pe-
riod. It is as though she was now saying, Ive been
there. Believe me, theres nothing to fear.
Her earlier human mediation had helped to hu-
manize not just death and dying, but painful care-
giver emotions and the health care systemin a wider
sense. Clinical Ethics emerged and made its way in
those days into a context or system of health care in
which the importance of honoring the experience
of all patients, not just dying patients, was increas-
ingly recognized. She had directed attention away
from the patient as pathology to the patients ex-
perience, the patients story. In that way she had
called the health care system to remember that the
human patient is and ought to be the center of
concern in health care. Having helped so many care-
givers awaken from the spell of dread and fascina-
tion toward death, Kubler-Ross herself withdrew
from her large lectures and seminars, and began
working with a much smaller group, in more re-
mote settings, trying to help them see more deeply
into and through death itself. So her writings in
the 1980s and 1990s appealed to a narrowing cir-
cle of readers, especially those with metaphysical
interests.
True, Elisabeth returned for a long period of
time, in the late 1980s, to her early dedication to
minister to the needs of dying childrenalthough
not this time to Jewish and Gypsy children in Nazi
death camps. Instead, she brought hundreds of in-
fants with HIV and AIDS to her compound in ru-
ral Virginia, and marshaled resources ranging from
medical to spiritual in order to provide support to
these children.
By that time Kubler-Ross had receded in the
minds and memories of young physicians and nurses
from an engaging presence to the author of On
Death and Dying (Kubler-Ross 1969). Her work on
the stages continues to be taught in university and
professional schools; it continues to provide lenses
through which young physicians and nurses can
recognize their own human feelings, and through
which they can bring up their own humanity as a
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Bioethics Remembers Elisabeth Kubler-Ross
bridge to relate to their patients and families during
sickness and death.
Elisabeth warned her listeners and students at
every presentation never to use her stages to label
and compartmentalize patients and families. That
would be another form of dehumanization. Dy-
ing patients dont have to go through stages, much
less in a sequential order, she repeated endlessly.
Use the stages as an algorithm to remind you
to listen, and to respect the depths of the patients
experience.
CONCLUSION: THE INTERSECTIONS OF
KUBLER-ROSS AND CLINICAL ETHICS
More than thirty years ago, both end of life care
and clinical bioethics were disciplines in gesta-
tion. Both evolved to become substantial forces con-
tributing to the growing and multiform efforts in
our time to rehumanize the health care system by
putting patients as whole persons back at the center
of health care. From the work of Elisabeth Kubler-
Ross, the contemporary disciplines of hospice and
palliative care took formand established themselves
in the healthcare system, re-orienting the focus of
care to the experiences of dying patients, their fami-
lies and their professional caregivers. Fromthe work
of John Fletcher, Albert Jonsen, Les Rothenberg and
others in the 1960s and 1970s, the discipline of
clinical ethics emerged in hospitals as committees,
teams, and individual consultants, re-orienting the
focus of care to the experiences, choices, and values
of all patients.
Hospice and Palliative Care are holistic, clini-
cal care programs, establishing ongoing and follow-
up relationships with patients and their families.
Clinical Ethics, by contrast, is an educational and
supportive resource to care providers and care re-
cipients, temporarily intervening to assist decision-
makers with the process of making their decisions
by providing education, information, and assistance
with communication and process.
Kubler-Rosss work intersected clinical ethics
in the 1970s, bringing to light issues that remain
important in the work of many clinical ethics ser-
vices with seriously ill and dying newborns, chil-
dren, and adults, e.g., informed choice regarding
CPR and other life-sustaining interventions, pain
management, physician-assisted suicide, and organ
transplantation. So also, for its part, Clinical ethics
continues to intersect Hospice and Palliative Care
programs, assisting patients, families, and care-
givers with ethical challenges such as whether to
require Do-Not-Attempt-Resuscitation status for
all hospice patients, how to discern the distinction
between hastening death and alleviating suffering,
how to accommodate patients who wish admission
to hospice programs yet wish to continue articial
life-prolonging measures, such as medical nutri-
tion and hydration.
Elisabeth Kubler-Ross helped to change the con-
text of health care in general and clinical ethics in
particular, in the sense that she precipitated a kind
of

Copernican Revolution

in the care of patients

in the US health care system, rst that of dying
patients and then of all patients. By placing the pa-
tients experience and voice, not merely the patients
pathology, at the center of attention and concern in
the health care universe, Kubler-Ross prepared the
soil within which the nascent discipline of clinical
ethics took root and grew well beyond her original
focus and sphere of inuence.
Kubler-Ross changed some of the content of clin-
ical ethics by bringing hospice and palliative care
from the sphere of ideals and ideas into the physi-
cal universe of health care. Partly owing to her ef-
forts and efcacy, the range of end of life options
for patients and families now includes hospice and
palliative care programs and services.
Kubler-Ross also directed professional care-
givers attention to the importance of process and
interpersonal communications in patient care, concerns
at the heart of The American Society for Bioethics
and Humanities core competencies for ethics con-
sultants. These core competencies include extensive
knowledge areas and skills, both process skills and
interpersonal skills. Of course, Clinical Ethics re-
quires knowledge and conceptual skills far outside
and beyond the knowledge and skill-set of Kubler-
Ross.
The circles of Kubler-Ross and Clinical Ethics
continue to intersect in our own day at the bedside
with patients, families, and caregivers in emotion-
ally and spiritually turbulent waters. Clinical ethi-
cists need process and interpersonal communication skills
to do ethics, including the ones that Kubler-Ross
helped to articulate and convey during her decade
of effective teaching. Todays clinical ethicists who
assist patients, families, and caregivers with end-of-
life concerns and decisions need to bring with them
the ability to recognize their own and others emo-
tional responses to crisis, sickness, and loss. They
need to be able to identify familiar and frequent
human ways of coping with those human responses
to crisis and loss by patients, families, and staff; and
they need a range of skills to provide role modeling
Fall 2004, Volume 4, Number 4 ajob W27
The American Journal of Bioethics
and assistance to others in communicating humanly
and openly about what matters most to human be-
ings involved at times of crisis, sickness, and loss.
Every clinical ethicist needs to put on the sun-
glasses from time to time, using the lens of the
stages to help foster understanding and accep-
tance of the powerful feelings of patients, fami-
lies, and staff struggling to make the least worst
choices available to themand the deep values em-
bedded in those powerful feelings.
In listening for, amplifying, clarifying, and
helping to register the soundings of the patients
experience and voice, this clinical ethicist builds
on and expands a part of the legacy of Elisabeth
Kubler-Ross. That legacy in clinical ethics prac-
tice can be discerned in David Kissanes insight-
ful exploration of the inuence of demoralization
on patients decision-making capacities: Detailed
understanding of the patients values, interests, rea-
sons, and commitments (in short, their assumptive
world) is necessary to make sense of their ap-
preciation of the clinical facts and the accuracy
or potential distortion of this appraisal (Kissane
2004). Such a detailed understanding, we learned
long ago from Kubler-Ross, requires drawing
closer to patients experiences by listening to their
stories.
Perhaps it is time to take further construc-
tive steps in our recalcitrant and still dehumanized
health care system, beyond that listening. Alfred
Tauber, MD, calls upon physicians to include an
ethics work-up in their history and physical inter-
views with hospitalized patients. He calls on hospi-
tals to begin including an ethics section in hospi-
talized patients medical records. Taubers rationale
in 2002 for calling further attention to the voice
of all patients echoes Kubler-Rosss call to listen to
the voices of dying patients in the 1970s. Tauber
writes,
Beyond the exercise of their knowledge of clinical
science, physicians must draw on their empathy and
moral understanding to address the myriad chal-
lenges that arise in the exercise of effective care [and]
effectively address the concerns that are often closest
to the patients own experience of illness.
(Tauber 2002, 559)
Tauber is appealing to his physician colleagues to
retrieve and increase their empathy for their pa-
tients, by bringing them closer to the experience
of patients through ethics work-ups. By listening
to patients voices and drawing closer to patients
experiences, he argues, the choices that patients and
physicians make together will more truly reect the
patients preferences and values.
Kubler-Rosss work affected Clinical Ethics
when both were new. Her legacy changed health
care and the context within which Clinical Ethics
emerged as a discipline. Her work brought to light
an ongoing agenda of important ethical issues in
end of life care, issues with which clinical ethi-
cists continue to work. Her description and role-
modeling of communication and process skills an-
ticipated the emphasis on these skills in Clinical
Ethics. She did not do clinical ethics, but she fer-
tilized the soil in which it grew into a discipline.
She took a mysterious path away from the society
and health care system that she affected so much.
Her work on the stages remained, and continues
to be part of the knowledge and skill set of clinical
ethicists.
From this clinical ethicist, then, one last time,
a round of applause. Thanks, Elisabeth.
REFERENCES
Becker, E. 1973. The Denial of Death. New York: Free
Press.
Bowlby, J. 1961. Processes of Mourning. Int. J. Psycho-
Anal. 42: 317340.
Hinton, J. 1967. Dying. Baltimore and Middlesex:
Penguin Books.
Kissane, D. W. 2004. The contributionof demoralization
to end of life decision-making. Hastings Center Report
34(4): 2829.
Kubler-Ross, E. 1969. On Death and Dying. New York:
Macmillan.
Kubler-Ross, E. n.d. Available from: http://www.
elisabethkublerross.com/
Parkes, C. M. 1972. Bereavement: Studies of Grief in
Adult Life. New York: International Universities Press.
Tauber, A. I. 2002. Putting Ethics into the Medi-
cal Record. Annals of Internal Medicine 136(7): 559
563.
Westberg, G. 1979. Good Grief: A Constructive Ap-
proach to the Problemof Loss. Philadelphia: Augsburg
Fortress Publishers.
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